Ha – that’s pretty much of an ingrained response, just one of my habits that usually serve me well. Today, I don’t actually have a lot of reason to say “Woot!”, because this day is no different than most of the days of the past week. I haven’t been working my a** off all week, so I don’t have a ton of reasons to be jumping for joy.
It’s another day. But come to think of it, that in itself is worth a “Woot!”
I’ve got some appointments this afternoon, and then we’ll get some Chinese food and watch a movie. Nice and drab. Boring is lovely. Not a lot of drama. Just taking care of business. Maybe I’ll have a nap later, probably I won’t. That’s fine. Because I’ve been catching up on my sleep, and I don’t have a very busy day today.
Yeah, thinking about my day, it’s pretty sweet. I have time this morning to catch up with some reading and writing, and just putter around the house. I’ll contemplate my life, think about the coming New Year, maybe take care of a few little things here and there, and get the ball rolling this afternoon.
Check the news… read some websites I’ve started following… and not worry about much at all.
And this is actually a slight change for me, since I’ve been a bit anxious over the past few days. Plans didn’t work out, or I got stir crazy, or I forgot to call people I promised to call… A while series of little annoyances set me off, and since all the Christmas activity wore me out more than I expected, the fatigue got the better of me.
But today is different. I’m just kind of hangin’ out. I’ll make those calls I forgot earlier, and I’ll go pick up the neighbor’s mail from their mailbox while they’re out of town for the next few days. Just get myself sorted and situated and settled. Enjoy the day, don’t make a big deal out of stuff… just kind of roll along and listen to some music I love. It’s not every day I get the chance to just chill out, so I’m taking advantage.
Looking back on the last year, I see I’ve spent way too much time worrying about stuff. For sure. It worked itself out, even though I was so focused on individual details — losing sight of the big picture, and getting swamped in minutiae. Maybe it’s just me getting older… maybe it’s looking back with hindsight (not exactly 20/20, but close)… maybe it’s just a shift in my priorities and interests… but I’m a lot less concerned with stuff outside my immediate control, than I used to be.
There’s only so much I can control or influence. I can certainly try, but my abilities are, of course, human, so…
The best thing to do is really take care of myself and figure out how I can make stuff work for myself. The rest of the world will figure itself out. Or it won’t. Either way, my life goes on.
Taking care of the present sounds so formal. It seems common-sense. And I suppose it is. But we live in a non-sensical world, these days, so it’s a lot more difficult than it seems like it should be.
Kick-starting my future is something I do — or don’t do — each day, with every choice I make. It’s a lot simpler than it sounds, and it’s a lot more complicated than it seems.
The thing is, we do this each and every day with the choices we make. We define our lives by our choices, and we further our plans with our actions. It’s not mysterious, it’s not magical. One thing leads to another, then another, then another. And all along the way, we have the chance to change direction, even slightly.
If you’ve ever thrown a ball, you know how wide of the mark you can go, if you alter the angle of your arm just a little bit. The same is true of our lives. One slight change in “angle”, and you can end up in a very different place than you originally intended.
A “little” slip on some stairs… a “minor” bump on the head… and your life can change in that instant. You can find yourself waking up each day, not knowing where you are, exactly, or where you want to go. Or you may wake up each morning wondering why the heck you didn’t get to where you were going the day before.
The brain is an amazing thing, and it’s surprisingly easy to disrupt in life-altering ways. We constantly take it for granted, like electricity or hot-and-cold running water. They’re all supposed to just work, just be there. And when they don’t… when they’re not there, we’re thrown into a state of chaos and confusion that blocks our ability to deal with anything.
The thing is, we tend to get stuck at that place of chaos and confusion. Perhaps because brain injury “rehab” is big business, with plenty of facilities billing plenty of hours to insurance companies, we don’t see a wholesale rush towards figuring out brain injury the way we should have long ago. Too many facilities make their money from people in need of help, rather than getting people back on their feet, never to need them again, so where’s the impetus to properly serve the brain-injured population? There are lot of us, with over a million TBIs added to our numbers, each year in the United States, alone, so I’d expect someone, somewhere to figure out how to end the suffering and teach people how to get back on their feet.
Well, never mind. Because there’s nothing I can do about that. What I can do is share my own experiences for everyone who’s interested in actually doing something about their situation, rather than staying stuck in something that can actually get fixed.
We all need a good dose of reality, when it comes to brain injury. That goes for health care providers, as well as those of us who get hurt. The brain is highly vulnerable. And the ways it’s most likely to get hurt are ways that hit us where it hurts the most — in our executive functioning, in our ability to plan and follow through, in our accustomed patterns that fall apart and plunge us into a steady state of anxiety… which builds up over time and impairs our ability to heal over the long term.
When we understand the true nature of brain injury (and don’t just get caught up in recycled notions that came from investigations done back in the infancy of brain research), we can also see that it is survivable.
We can — and do — recover from brain injury.
No one can take that from us. No one. Not any of the “experts”, not any of the scientists or neuropsychologists or psychiatrists.
The thing is, “recovery” means more than just restoring prior functionality to the injured brain. ‘Cause people, once the connections in your brain are disrupted, they stay that way. You can’t rewire broken connections. But we can — and do — create new connections that may function a little differently, but are still every bit as useful (sometimes more useful) than the old ones. And ironically, in my case, I find that some of my new connections are much, much better than my old ones, because I formed them with more life experience than before.
What we’re recovering is our personhood. Our dignity. Our self-respect. Our individuality. I think the brain injury rehab industry lacks an understanding of how much more important that is, than any level of physical or cognitive processing. People get hurt all the time. We break bones. We get cut up. We get smashed and smooshed and crushed. And then we recover. We may not have full range of use after we heal, but we get on with our lives. We may limp along or not be able to reach over our heads to get stuff or have to stop shoveling our own snow, but that doesn’t keep us from living our lives.
Same thing with brain injury. We may not restore our brains to their former glory, but we can adapt. Losing certain brain functionality is not the problem with TBI recovery. It’s losing our Sense-Of-Self that does a number on us. It’s the panic that sets in when we find ourselves doing things that are “unlike us”. It’s the repeated little shocks of being surprised by one thing after another that didn’t used to surprise us. It’s the gradual disappearance of our friends and family who used to know us as one person, but can’t adjust to the new person we’ve become. That loss of the Self, that erosion of security about who we are… that’s the biggest hurdle to overcome with TBI.
Because if you don’t deal with that, your functional recovery is going to lag. Brain injury recovery is a re-learning process. It’s all about re-training the brain. And if you’re totally stressed out over everything, you can’t learn properly.
It’s that simple. And it’s that complex.
And it doesn’t need to be the big-a** mystery that we make it out to be, because it has to do with the braaaaiiinnnn.
Brain injury recovery is a matter of living your life. Learning to live your life. Teaching yourself how to get on with things, when everything looks different, feels foreign, and doesn’t square with how everything used to be.
It’s about choice. Action. Reaction. Learning. Adapting.
And when we tend to our present, choosing to learn from each and every conscious moment, we move ourselves towards a future of our own making.
As the current year winds down and the new year approaches, I hope you can own that, yourself, and — whether your brain is injured or not — take responsibility for a future you can absolutely positively make up as you go along.
I have been meaning to get more sleep, during this vacation. I’m able to take naps in the afternoon, which is great. I just can’t seem to get to sleep at a decent hour (before 11:00 p.m.) Part of the problem is that I just don’t want to go to sleep earlier than 11:00. I’ve got an internal clock that tells me when it’s time to sleep, and it generally doesn’t kick in till 10:45 or so.
It’s a little nerve-wracking. But I do it to myself, putting all kinds of pressure on myself to go to sleep, when I’m not really feeling that tired. And then getting up at my regular time, which lately has been anywhere between 5 a.m. and 6:30 a.m. So, I’m not always getting a full 7.5 – 8 hours, like I need to. And then I wake up irritated, because I can’t sleep through.
It’s an ongoing problem, especially during this vacation.
Well, my life is structured very differently now than it is when I’m working. I’m still doing my morning exercise, which is crucial. I’m actually doing better with it than usual — getting both my bike ride and the weight lifting done. I just don’t move enough during the day. I move more, when I’m at the office, because, well, I’m at the office. I have to go to meetings. I have to get my lunch on the ground floor. I have to make trips to the water cooler as well as the restroom. It gets me up and around, while being at home — where everything is within easy access and just a few steps away — keeps me sedentary. Heck, I can even work while sitting/lying on the sofa, which sounds great, but is a bit of an occupational hazard.
Anyway, it’s the end of the year, and I’m kind of out of sorts. Feeling like I’m drifting, cut loose from my moorings a bit… feeling like I fell asleep in a rowboat that was tied to a dock, and then I woke up finding myself drifting out in the ocean, with the dock in the distance. The thing is, although the distant docks look familiar, and that’s where I expected to wake up, I can also see other sights in the distance.
Cities I didn’t know existed before.
Distant piers and jetties that look every bit as interesting as what I’ve known before.
Busy industrial ports that hold mysteries within their iron fortresses
And secluded beaches to explore.
Different sorts of places where people live, work, and go about their business, which are both foreign and fascinating to me.
And lighthouses to guide me along the way.
Lights… sights… sounds… And a whole world of choices out there.
When I actually have some time to catch up with myself, I can see so many more possibilities. And it’s invigorating.
But it’s also a little depressing. Because I spend so much of my time in recovery mode, just trying to right myself in the very wrong world, that I don’t have as much time as I’d like to just kick back and relax into finding out What’s Next.
I look around me at my life… And I see so much more beyond my present situation. And I also see that the resources I have at my disposal are, well, limited. I’m not complaining. I’m just saying. I don’t have all the energy in the world, and I don’t have all the patience to match it. I want to cut to the chase and get on with my life, to the best of my ability. And after all these years of really working on my TBI recovery and firming up my Sense-Of-Self, I’m finally at a point where I have a reliable idea of how “I” am going to react and behave under certain circumstances.
That’s the biggest, hairiest, most dangerous part of life after TBI — losing your Sense-Of-Self. It erodes your self-confidence. It crushes your self-respect. It makes every situation into a danger-fraught series of surprises that threaten everything you care about. And then the real trauma of TBI sets in.
I really believe that the biggest trauma in mild traumatic brain injury comes after the injury itself. There’s a steady stream of “micro-traumas” which stress out our systems and add to the fight-flight biochemical load. And unless we learn how to manage our fight-flight overload and learn how to clear out the neurochemical gunk of all that ongoing stress, mild TBI continues to take its toll. It continues to haunt us, to tax us, to load us up with invisible burdens that nobody else understands, but which are very, very real.
If you really understand the physiology of trauma (and not a lot of people know about it, let alone understand and fully appreciate it), and you understand the profound change that even a “mild” TBI brings to your entire system, all of this makes sense. You know that the subtle changes to how your system works are disorienting and anxiety-producing. You know that the body’s mechanisms for protecting itself are working overtime post-TBI, and they’re kicking in, in the most unlikely of situations. You know that the overall effect builds up, and you know that it’s cumulative.
You also know that while the effects may show up as a psychological disorder, the underlying basis is a combination of mind and body — and the body bears the burden of it all.
The thing about this whole deal is, because the body is involved, it’s possible to work with the body to turn that sh*t around. Even if your mind feels like mush (I’ve been there), even if you can’t remember what you did, just a few hours before (I know the feeling well), even if you can’t get through your morning without a detailed checklist (the story of my life for years), the body can act as a gateway to recovery.
Regular exercise helps stabilize your system. Eating the right foods (and steering clear of the wrong ones) helps your metabolism stay stable and keeps you off the blood sugar roller-coaster. Getting enough sleep lets the brain “knit itself back together”, as well as clear out the gunk that builds up, just as a result of everyday living. Plus, learning to regulate your heart rate and your blood pressure can train your overall system to get back to a stable state, even if everything feels like it’s falling apart around you.
I’m sipping the last little bit of my half-cup of coffee, as I write this. The snow from last night is giving way to freezing rain, which will fall until midday, when the temperatures start to rise, and regular rain falls. There’s always a chance that the ice buildup will take out our power, and that’s no fun. But I have wood for a fire in the fireplace, and we’ve been keeping the house pretty warm, so we’ll have some residual heat to see us through. In the past, we’ve had some pretty hair-raising experiences with losing power, and I don’t look forward to repeating them.
But I know a lot more now about keeping my physical system stable, and I’m in a much better place, mentally, than I’ve been in past years. So, I’m at much less risk than before. And knowing that relieves the pressure and also reduces the risk of my “losing it” even moreso. And that’s good. It’s awesome.
So, where was I… I’m kind of meandering, this morning, as I try to get my bearings. I’m looking back at the last year, wondering if all the effort really paid off the way I wanted it to. I’m not sure it has. Some things I started have kind of stalled. And other things I wanted to continue with have floundered, as well. In some ways, I’ve been as diligent as ever. In my day job, for example, I’ve been invested and involved in ways that have actually paid off. When I think of all the other jobs I screwed up since 2004 (and even before that), it’s kind of depressing.
So, I won’t think about them. I’ll focus on the good.
And as I look forward to my future, I see a much simpler — but much more do-able — path ahead. I’ve let go of a lot of old activities that were busy-work I picked up for the sake of pumping up my tonic arousal (the state of wakefulness in your brain) and getting my system turned “ON”. I had a handful of websites I wanted to start, a number of business ventures that seemed promising, apps I wanted to build, and novels I wanted to write. That extended experiment in busy-ness went on for 10 years or so, and it just didn’t work out, so I’ve now narrowed my focus to a few particular activities, which will actually lead somewhere.
Heck, they’ve already started to pay off. And taking the pressure off myself to go find another job… yeah, I’ve let that one go. Yes, traveling for work every few months really takes it out of me, but there’s no guarantee the next job won’t be just as much of a pain in the ass. Plus, it’s too stressful to go changing jobs every few years. I used to thrive on that experience, but now it’s just a pain in the ass. I need to look for the good in things and tweak the things that I’ve got going on… not ditch them and go looking for something better, somewhere else.
So, I guess I’ll wrap up my ramble. My morning is in free-flow, so I’m just letting my mind wander as it will, for the time being. I got my grocery shopping done yesterday. I got my meals for today prepared yesterday, too. I can’t go out and do anything, because the roads are bad. There’s no need to go anywhere, anyway. I’ll just hang out for the day… drift… make a fire, perhaps, and catch up on my reading.
And write a bit more. Because I can. I’ve got the time and the opportunity. So, yeah…
So, it’s Friday. Finally. I have mixed feelings about this. On the one hand, it is a huge relief to be done with the week. On the other hand, I have so much to do and so many deadlines, that taking a few days off just makes me dread next week.
I’ve been doing a lot of dreading, lately. I am behind on a number of of my projects – there are just too many of them, and they are all TOP PRIORITYin the eyes of others. I’m keeping things running that need to keep going, and I’m also working on building new pieces of the puzzle that is my occupation. And the new pieces are getting intense push-back from people who want things to stay as they were.
Which all seems pretty unfair to me – it wasn’t my idea to make all these changes. My job is just to make them happen. But I get the brunt of people’s objections and opposition, while management sits back and lets the underlings duke it out. Which is incredibly uncomfortable and bothersome for me.
Really, what I want for my life is some peace. I have had a hell of a decade, and I value peace and common sense a whole lot more than I did when I was in my 30’s. I’m nearing the end of my 40’s, now, and I feel it very strongly. I have changed. My injuries have changed me. The upheavals of my life have changed me. All the drama I have gone through in the past ten years since my TBI in 2004 has changed me. It’s almost like life was on the lookout for my 40th birthday, and as soon as it was in sight, all hell broke loose. It didn’t even wait for my 40th birthday, because everything started to come unraveled a few years before… which contributed to my fall down those stairs in ’04.
Interesting… I’m seeing a lot of 0’s and 4’s in the last paragraph. Not that I’m superstitious or anything…
Anyway, enough bitching about how hard life has been. Everybody has it hard, in one way or another, and it’s really up to me to decide what to do with it. Rather than fighting things and resisting them and wishing they were different, I could be facing up to what’s ahead of me and just going for it, treating it like a learning experience, rather than proof that I’m a screw-up and will never get anything right.
When I approach everything like a big ole learning experience, so much the better. Teach this old dog some new tricks, and see how far it can go.
It really does take the pressure off.
And that makes all the difference in the world. It changes the tone of my whole experience, which is exactly what I need. The longer I’m alive, the more I realize just how elusive true happiness can be, and I value inner peace and equanimity all the more. I understand more than ever just how destructive unchecked anger can be, I know from experience just how much time is wasted by indulging fleeting emotions and giving them the ability to mushroom into Major Events. I have watched the last 10 years of my life be undermined and shredded and dragged down by rage and anxiety and poor self-management, and I have seen years of quality experience prior to that go wasted, because I was too busy being angry or hurt or confused or frustrated or worked up about something, to make the most of my past.
And today, as I look ahead to a day I’m not looking forward to, when I’m going to be working with people who are NOT on the same wavelength and revel in all sorts of discord and disruption and downright treachery, the painful truth about what my TBI cost me, is very clear to me – front and center.
Days like today are one of the big reasons I am so intent on my TBI recovery — regaining my equilibrium… mastering my emotions… taking care of my physical health… fine-tuning my behavior and how I think about myself and others. I don’t much care for the situation I’m in, and I need to build up the resources and the ability to extract myself from this situation.
The first step is extracting my mind from a situation of dread and avoidance. I hate dealing with some of the folks I have to deal with… come to think of it, I hate dealing with just about everybodyI have to deal with. But the thing that makes it harder, is avoiding and refusing to engage with them. When I just step up and do what needs to be done, the wheels start turning, and the anxiety and frustration really decrease. Even though I’m not happy, and I really dislike dealing with these folks, still, I’m doing what needs to be done … to get the hell out. I have to deliver a project before I leave, and there is a big-ass deadline on it. And I need to have so much done before that date. Crazy. But as long as I hold back and don’t do what I need to do, it’s even crazier.
So, enough procrastinating, enough avoiding. It’s time to get on with the day, go deal with these … people, and take yet more steps towards getting the hell OUT. Time to make this day what Iwant it to be.
Well, I simplified my day yesterday, and no animals were harmed in the process.
I went back to sleep in the morning and got another couple of hours rest, then after I woke up, I laid in bed and checked in with friends on my smartphone. If it weren’t for my job, I would not have a smartphone. I don’t have the money to have one of my own, I don’t generally see the need for them, and I’d just use my computer for Facebook and email and whatnot if I didn’t have one. But the smartphone makes it so much easier to keep in touch – especially via FB. So, I do. When I need to.
Even when I don’t need to, I am getting in the habit of reaching out, just to stay connected with people. Usually, I keep to myself and isolate. A lot. But having social media makes it easier for me to keep in touch. I also have made a point of taking out the “friends” on FB who drag me down, are negative and whiny, and I’ve liked a bunch of positive motivational pages, as well as amazing pictures pages, so I have a steady stream of optimism and encouragement and downright beauty in my life on a regular basis.
It really is addicting, the beauty and joy. In the best of ways. Whenever I’m feeling down and lost, I check in with FB, and the pictures of nature or the positive sayings lift my spirits. If nothing else, they get me out of my own head, which is a dangerous place to be.
I’m feeling better this morning than yesterday. It was a little rough at first, but I got myself up, had some breakfast, moved around a bit, had some vitamins, a warm drink, and some Advil. Now I’m working on my cup of coffee, slowly… thinking about how I want the rest of my weekend to be.
I was feeling incredibly low, on Friday night. Just burnt out and wiped out from drama at work and how hard it has been to actually connect with other job opportunities. This is a tough job market, if you don’t have easy-to-plug-in skills or a degree, and that’s me. I have been doing what I do for a long time, but I’m not some easy-to-pin-down, cookie-cutter worker bee anymore. And I don’t have a degree and all sorts of certifications, so that disqualifies me in the running, from the get-go.
I was reading an article last week, about how the automation of job searches is passing over some really great candidates. I think I’m falling into that category, and I suspect that I’m getting passed over because I don’t list any degrees on my resume. The thought has occurred to me to just make something up and lie about my qualifications, to get past the automated “gatekeepers”. People would probably believe me, too. But with my luck, I’d get caught. And anyway, I can’t live with that hanging over my head.
All that thinking and reading about how bad things are didn’t actually help me. And it really dragged me down. I get locked into one way of thinking a lot, which is not good, and then I get stuck. It’s worse when the one way is depressed and suspicious and anxious.
So, I broke it up yesterday and got out and did things. I wrote down a lot of my frustrations and got them out of my head and onto paper, and that made me feel much better. Then I took care of some chores and just tended to the day-to-day, and that felt better, too. I moved, I took action, and I did a few things for my Big Project last night, that I’ve been meaning to do. It felt good to finally check them off my list.
By the end of the day, yesterday, I was feeling much better. In spite of simplifying my day, I got a lot done, and I made steady progress. And I even had time to watch a little television before I went to bed.
An interesting thing happened last night as I was getting ready for bed. I looked outside, and it looked like it was still evening, with the sky still light and the world around me still lit up. I could hardly believe it — it was nearly midnight, and it looked like it was 4 p.m.
I went downstairs and walked out on the back deck, and the full moon was bathing the whole world in a bright silver light. It was much milder last night than it’s been in weeks, and the stars overhead were phenomenal. So, I pulled on a couple of layers, got my hat and gloves and a flashlight, and I went for a walk.
The evening was so quiet, the roads were empty, and the moonlight was just amazing, flooding the world with silver light. Everything was lit up, and shadows of great trees sprawled across the road in sharp, craggy relief. Outdoors it was totally silent, except for the sound of distant traffic and the rustling of little creatures under the autumn leaves in the woods along the road. It was as though the whole world were there for me alone, with all my neighbors either tucked in and lights-out for the night, or staying up late with all their house lights on.
What an amazing walk it was. I wanted to keep going, but I was really tired and I hadn’t had a nap yesterday. I needed to get back, and not so far off in the distance, I could hear coyotes calling. So, it was probably best that I head back. The coyotes in this area don’t usually bother people, but why take a chance of surprising them at midnight.
Back home, I could feel myself so much more relaxed after my walk. Just having the silence and the space and the room to move — all under the brilliant moon and stars — what a gift it was.
Which brings me around to the topic that has been on my mind a lot, lately — gratitude. I’ve realized that with all the changes at work and all the reorganizational challenges, I’ve lost sight of the good that’s come with the changes. There are a number of things that have gone away, that we’ve lost — a lot of autonomy and freedom to move and make our own decisions, as well as the amazing commute that was a real blessing when I had it. In the midst of seeing all the things that are wrong, I’ve lost sight of the things that are right.
A part of me has been stubborn about admitting that some things are right, because part of me thinks that will validate the stupidity that seems to reign supreme, and somehow make it alright. It’s not alright, and there are some serious issues at play in that place, but when I focus on the bad, it blinds me to what good I can find. And it drains me. It doesn’t only hurt the company (which many folks at work would actually like to hurt), it also hurts me. It saps my energy, it taints each and every day with bilious resentment, and it makes the already difficult things that much harder to handle.
And that will never do. So, I’m finding a new way of approaching thing — Seeing the bad (the awful, actually) and seeing how it can lead me to something new and different. There are so many different options available to me — new paths to explore, new ways of interacting, new ways of working, new projects — why get dragged down by the sh*t, when I can be looking to a new way, a new approach, a new chapter of my life?
Indeed, the fact that things are so bad right now, can actually make my life better. I can see them for what they are, not fight and resist and resent them, but simply see them for how they are — plain and simple. I don’t need to complicate matters with all sorts of mental gymnastics that keep me locked in place because I’m gyrating through all kinds of emotional drama. I can simply — very simply — see things as they are, accept that they suck, objectively move on to what is next in my life, and be grateful that they provided the impetus for me to do more with my life.
It is taking me a long time to move along to what’s next, but maybe that’s for the best. Maybe I have not been thinking about things as expansively as I should be. Maybe I have not been considering all the options in front of me. Maybe I really do need more time – and I need to stretch.
These are all things that have been rattling ’round in my head for some time, now. Plain and simple, I’m in a kind of a holding pattern, and I need to find ways to use this time wisely. I’m not sure that making myself more “plug and play” is the answer — I’m capable of more than that, and being slotted into a cookie-cutter position is not going to do it for me.
The thing I also need to remember is that I have a number of different projects in the works, and some of them are really taking off. So, if I start a new job, that’s going to suck a lot of time and energy away from my overall “supplies.” Yes, it will stress me and “wake me up” and make me feel alive again, but long-term, this is not sustainable, and it’s a recipe for eventual pain and suffering.
So, simplify, simplify. Keep things basic and focus on the fundamentals. Apply myself in intelligent ways, and don’t get caught up in distractions that feel like they’re “taking the pressure off” when they’re just distracting me and interfering with what I should really be doing.
When I think about it, I have plenty to keep myself occupied, plenty to add meaning and purpose to my life. I can let the job situation just BE, for a while, focus on other things, and think about where else I want to go with my life.
It’s all good. I just need to stop complicating things for the sake of the drama adrenaline rush, and let myself be grateful for what I have.
It’s not all about what I’ve lost. It’s also about what I’m gaining.
I’ve been thinking a lot about why I keep this blog. Someone who’s been a reader here for a while has commented that I spend too much time over-analyzing and thinking about brain injury, and that I should just be thankful for what I have, live my life and get on with it.
That’s been a challenge for me to digest, probably because there’s some truth to it. It’s partly true that I do spend a lot of time thinking about brain injury and how it affects me, and sometimes it keeps me from just living my life. At the same time, one of the driving forces behind keeping this blog is the deafening silence out there about brain injury, from a personal point of view. When I first came to terms with the fact of my history of TBI, it was all but impossible to find *anything* personal about TBI — there were just a bunch of “scientific” sites, many of which were selling or promoting something — with objective, impersonal information.
And I felt completely alone.
I still feel alone, but a lot less so, since I’ve been blogging about TBI. Something about just writing this all down and putting it out there, is not only cathartic but also helps me put things in perspective. I don’t have many friends or social interaction outside of work — I get too tired to maintain friendships for any length of them. And I don’t keep in regular touch with my family, in part because they exhaust me with their attitudes and their choices and their drama.
More than anything, fatigue has changed the face of my life, since I fell down those stairs in 2004.
And there doesn’t seem to be any relief in sight.
But I digress.
One of the things that a few people are saying that I really agree with, is that it’s not concussion/TBI that’s the problem. It’s mismanagement of concussion/TBI that gets us in trouble.
The Concussion Blog is one of those places where this is talked about. The blogger/author there talks about management from the perspective of an athletic trainer. And I talk about managing TBI/concussion from the “inside” — the personal perspective of someone who is dealing with TBI on a regular basis. I do this because I want to demystify the world of concussion/TBI recovery and put human face on something that usually pulls people into the shadows to hide “until they’re better”, which doesn’t happen nearly as often as we’d like.
When it comes to TBI, there are tremendous stigmas attached. Not least of which comes from inside our own heads. We become different people. Our lives can be turned upside-down. It may look like there is no end in sight, and we can lose hope. Simple fact of the matter is, it is not easy, dealing with TBI, and that’s just a fact we need to accept and work with.
For many, this can be tremendously unsettling, and we may want with all our might to just put it behind us and get on with our lives, not worrying about what was before, but trusting that we will get the help we need as we go on. That help may be from within, from God, from family and friends, or from an agency or rehab. We don’t want TBI to stop us, and we want to just have the best life possible, without staring at our navels all day long.
For others, the many phenomena around TBI may be a source of fascination, even compulsion — some might say obsession(?). When something nearly takes you out, and it’s so big and undeniable, it can be a source of intense scientific interest. Sometimes people turn to studying the very thing that nearly killed them — like people who have close calls with snakes or sharks or other threats as kids, and then become scientists who study them. I fall into that category — especially because I was raised around scientists and I grew up spending a lot of time with my grandfather, who was a college professor in natural sciences.
For other people, they may never be able to put TBI behind them, and they may struggle for years and years — alone, misunderstood, discriminated against, and marginalized… and never fully understanding why. It’s my hope that some of what I write reaches those people and helps them feel less isolated and alone. Life can be rough on all of us, and TBI folks especially.
The biggest problem that I can see is the isolation and the feeling that nobody understands you, nobody can help you, nobody gets it, and you’re just a freak who’s good for nothing. When you feel that way, it’s easy to let others marginalize you and mistreat you, which does not help your ability to self-advocate and get the help you need. And it just feeds the vicious cycle that pulls us into the progressive downward spiral of TBI. So things can get a lot worse, before they get better. If they get better at all. What happens inside our souls after TBI, can be even more harmful than what happens inside our heads.
So, if I come across as egotistical, self-consumed, and perseverating… it’s all in the interest of being real about my own condition. I don’t want over-analyzing TBI to stop me from living my life — and in fact, it doesn’t — but I also don’t want to pretend that everything is hunky-dory and there are no issues in sight. For years, I was totally focused on barrelling through all the hurdles along the way and leveling every barrier to my success. But lately, I’m just too tired to keep up that charge. And I’ve got to get real about my situation.
So, that’s it for today. I hope it has done someone somewhere some good.
So, it’s Monday, and I have to say I’m relieved. This past weekend was kind of sh*tty, and I didn’t get much of anything done that I had planned, which is a bit of a problem, because I have a lot of things I need to get done, and I had two whole days to do them.
Oh, well. Next…
It’s always interesting, seeing how my best-laid plans turn out. I mean, I had the whole weekend choreographed within an inch of its life, and then Friday I flared out and spent the weekend feeling like crap, fighting with my spouse, recovering, and just trying to feel like an normal person again.
Now it’s Monday, I’m back in the swing of things, and I’m actually feeling better — even though I am still foggy and dull and not nearly as sharp as I’d like to be.
The thing is, during the week, there’s all this energy, all this activity. And on the weekends, there’s not. It’s a massive disconnect, and I think that’s what makes me sick — just not being able to keep moving. My spouse has a lot of issues with my “energy levels” — they say I make them anxious, and I’m “too kinetic”. Yah, well, whatever. Kinetic gets the bills paid, you know?
At the same time, they do have a point — I do push myself too hard at times, and I burn out. That is my doing, and it’s the result of me not taking sufficient breaks and not allowing myself sufficient recovery time to come back from my flurries of activity. I need to do a better job of that, and I’m working on it.
One other piece of the puzzle, though, is how much my spouse has slowed down over the past years. They’re a few years older than me, but they act like they are a LOT older than me. We each have very different ideas about lifespans and quality of life — they are convinced that they’re going to live only a few more years — as long as their parents (who both died years sooner than they should have) — and at the same time, they’re terrified of dying. I, on the other hand, believe I’m going to keep going for decades to come, and my main concern is keeping myself mentally sharp and active and able to be involved in my life for the many coming decades. So, I’m ramping up at the same time my spouse is slowing down.
Total disconnect. It’s pretty tough to see someone so close to you, who has been such an integral part of your life for the past 25 years, just giving in to the hype and giving up hope of anything different happening. They say they don’t want to die, and they say they want to live a long time, but they actually don’t act like it. Actions speak louder than words, and their actions say they’re getting ready to pack it in and pass on. The bitch of it is, at the same time they’re doing less for themself, I’m required to do more.
Yet another reason to keep my strength up and keep fit. I can’t imagine the next 10-20 years with them (if we have that long) is going to be a cakewalk.
Well, anyway, what can you do? I’m just glad the weekend is over, and I can get back to my regular routine, taking care of what needs to be taken care of.
I did my warm-up exercises this morning — some weight lifting and some balance work and some coordination footwork. I’m focusing less on building strength and endurance with extended workouts and focusing more on warming up, feeling good, moving, and getting in the swing of things. Waking myself up, and feeling good at it, too. Just moving. Getting the blood pumping and getting a bit out of breath. Pushing myself a little bit, and then giving myself a chance to recover.
I’ve got my list of things I need to do, and I started on one of them this morning. Having my list makes things so much easier — I don’t have to keep things in my head, and I can put everything in perspective by seeing it all on paper in front of me.
That helps. When I try to do it alone without any tools or props… look out.
Speaking of looking out — the day is waiting. Gotta get a move on and see what the day has to offer.
So, I’ve reached a milestone with my project — a big piece of it is done – and a few days before originally planned, which is great.
Now, I have more to do later today, but first I will take a break.
The wild thing is, there are a number of non-optional things I need to do – that’s right. Non-optional. Required. Time-sensitive. But I have a hell of a time getting them started. I can be a total head-case at times, which really only hurts me.
I know that. But I just can’t seem to start those things. I HAVE to answer emails from project teammates. I HAVE to get back to them with details and responses. But I avoid doing so like the plague. As though that’s going to help me.
So, to get started, I make a deal with myself — I will only answer ONE of the many people who have emailed me. Just ONE. No more. At least for starters. I will demand only that of myself.
The thing is, once I get going, and I get warmed up with answering that “one and only” person, then I actually feel like answering everyone else. And I start to enjoy myself, remembering the feeling of accomplishment and satisfaction that comes from following up and making contact with people.
That is a huge stumbling block for me. I am just not comfortable with people a lot of the time. Even more-so, I am not comfortable with the prospect of dealing with people. That’s what stops me. The prospect. Once I get going, I feel so much better, I get into the swing of things, and I really enjoy myself.
But the dread… oh, the dread…
Some days, it is insurmountable.
Like yesterday. I had a bunch of people contacting me, needing feedback, but I focused on the other tasks I had, and I didn’t get back to them till this afternoon. Once I got going this afternoon, though, I realized just how much I enjoyed it, and I was sorry I hadn’t done it sooner.
No time to waste on regret, however. At least I did what I did, and I hope the results will be good.
So, yeah — in order to take many steps, I need to take the first. Just do that one thing. Just make a deal with myself to do ONE thing, and not require anything more. Make the rest optional — and then I will want to do it.
I woke up today in a state of total, unremitting despair. All the world, it seemed, was caving in on me, and there was no place for me to turn. Looking around my life from the central point of my bed, all I could see was difficulty and challenge, no help to be had anywhere, and I was convinced that I am utterly alone in the world.
How could I help but weep uncontrollably, which is what I did. I was alone in the bed — my spouse and I have been sleeping in separate bedrooms for over a year, now — and even if I had been in bed with my beloved, it would have just made things worse. I would have set them off. And then we’d be off to the races.
I haven’t talked much (at all?) about the health issues my spouse has, but they are fairly serious. Life-threatening, actually. Life-changing. They’ve pretty much been disabled and unable to work since 1996. I don’t talk much about it, because it’s a never-ending saga of two steps up, one step back, one step up, two steps back. It’s exhausting even to think about it, so I don’t write about it or talk to others about it. It’s actually much easier for me to be a caregiver mostly by myself, without needing (with my confounded communication and organization issues) to explain in detail to everyone around me what I need, what they need, what will help, what will make things better.
One of the big drivers behind me trying to figure out this TBI business, is that my injury in 2004 severely curtailed my ability to be a decent caregiver and provider. If I hadn’t realized just how much my injury was mucking up my composure and my ability to earn a living — if those hadn’t been a problem at all — I might not be on this journey, right now. I probably could have let it all slide, for a time anyway. That’s what I’ve been doing for years, after all. It’s landed me in all sorts of trouble, but somehow, when the trouble only seems to affect you — and you can still make a living and slide by in the rest of life — it’s much easier to gloss over it.
When you’ve got an ill partner to care for, that changes a lot. Throw in a whopping mortgage and a bunch of other financial and logistical responsibilities, and you’ve got a hell of a compelling case for figuring this sh*t out.
Anyway, enough about me. The thing with my spouse’s health issues is that flare-ups with physical issues tend to trigger extended cascades of panic-anxiety, which are even more debilitating than the underlying physical problems, themselves. And when they are down or in a prolonged panic state, they neglect their physical upkeep, which exacerbates their physical condition.
Their “regressions” can be months-long drawn-out dramas of them needing almost constant positive reinforcement and support, as well as consistent reminders and motivational pep-talks about why it’s good to stay away from multiple packages of high-carb junk foods, and high-fat, high-sugar “treats”. It takes a mammoth effort of will and radical compassion to steer them back on track. They know they should do it, but there are a large number of complications that come into play. It’s just not a simple cut-and-dried case of steady-on. They’ve got a whole raft of issues from many, many years of awful, violent, immediate-family situations and bad relationships, so we’ve got that to contend with. Ghosts live in our home, and my spouse at times seems to have more of a relationship with them, than with me.
Now, once my partner is back on track, it’s good, and they can carry on in the world with relative normalcy. But I never know if they’re going to stick with their routine or if they’re going to feel like “taking it easy” and go off on another bad-food, bad-habit binge… and stay there for the next six weeks. Eating wrong and stopping the exercise and getting away from regular sleep-waking cycles might not seem like that big of a deal, but believe me — mind and body are totally connected, and if they neglect one, the other starts to go. Pronto. So, I tend to be on-guard a lot. Like a little Shetland sheepdog trotting around their perimeter and nipping at their heels to keep them away from the cliff, as best I can.
As best I can… which is not always that great. Over the years, we’ve had some better and worse times, the better times being when both of us were working and fully engaged in life. We have not had the easiest time of things over the past 20 years. We’ve been in extremely dire financial straits several times, nearly got evicted a few times, were on the run from angry landlords and creditors a few times, and along the way we’ve had our share of trashed relationships with people who purported to be our friends but then turned around and screwed us royally. We’re both trusting sorts with big open hearts. That’s the risk you run, when you’re open to people and you see the best they have to offer — you sometimes see a side of them that’s not their “default”, so you end up expecting one sort of behavior, but are the recipient of another.
But that’s another post for another day.
Anyway, lately, my spouse has been a little worse for wear — as have I — over money and work circumstances. They’ve got a couple of jobs coming up that will bring in money, which is great… but they need help doing it. In the past, I’ve helped — I was their main support. But I also over-extended myself, and one of the reasons I’ve gotten brain-injured several times over the past 15 years, is that I over-extended and exhausted myself and I didn’t take good care of my own safety.
Now, all that comes up again — if I don’t help my spouse do these jobs, the money may not come through. Or they may have some sort of breakdown without me around to stabilize them. But if I do help them, I may be compromising my health and possibly my safety. They’ve done events when I wasn’t there, and when the going got rough, they fell apart – which is not a good way to attract new business. So, the pressure is on for me to pitch in and help. Meanwhile, I’ve got this new job and I haven’t accrued enough time to take vacation to help with these gigs, and I worry that the exhaustion is going to impact my performance at work. I’m feeling like if I don’t rob Peter and pay Paul, we’re totally screwed. Both of us. Either way doesn’t look like a good thing.
The most frustrating thing is how none of this can be separated out into my-stuff-their-stuff. When you’re living with someone who has some serious physical and mental health issues, and you’ve got your own TBI complications to deal with, the problems one of you has never just stays your own — you both have the problems.
And that’s a problem.
Which is where I ended up this morning, weeping bitterly and desperately in the isolation of my room. Alone. Completely alone. Screwed. Totally screwed. All the world was closing in on me, and I could see no way out.
How much easier it would be, I thought, if I weren’t around. If I died, my spouse would get my life insurance, could pay off the mortgage, have the place to themself, and wouldn’t be bothered by my outbursts and “rough patches”. The thought has occurred to me a number of times over the years that they’d be better off without me, and it came up again this morning.
But after I’d completely abandoned myself to the despair for a while, eventually I got to thinking…
And it occurred to me that I/we have been in much tighter spots, with far less resources, far less knowledge, and with far fewer tools to deal with everything, than we have today. Things may look desperate, I may feel desperate, but is that really the whole story?
Let me think…
I think not.
Looking back, I can see — plain as day — how things just manage to work themselves out over time. Things change. It’s the nature of the world, the nature of life. And even though the shit may hit the fan, shit always turns into something else.
Or dried chips you can use to build a fire.
What’s more, when I look objectively at my life and compare it with the lives of others in dire straits, I know for a fact that I am not alone. I may not be personally acquainted with everyone who is having a rough time (though many of my friends are), but I know that I am not the only one in this world who suffers. And I know that I am not the only one in search of answers.
No, contrary to all appearances, I am not alone.
And I realized, as I got outside the confines of my poor-me head and really thought about my situation, that the main reason I was in so much pain, was that I was dwelling on the pain. I was dwelling only on the pain. Nothing else.
Which was not the whole story.
The whole story was also about the sun coming up outside my bedroom window, and there was a beautiful pink tint to the clouds.
The whole story was also about me having the presence of mind to plan a nap later today, so I don’t get too depleted.
The whole story was also about me being tight and cramped because I wasn’t taking care of myself — and me knowing what to do about that: get up and exercise.
The whole story also includes the simple, simple fact that doing something as basic as breathing can bring me back into my body, get me out of my head, and infuse me with energy and life that gets me out of the bed with ideas about what is possible — not what’s “impossible.”
The whole story is also about how these friends of ours who are having tough times too, are available to help with some of the things that need to get done, and I am not, in fact the only one who can help. And my spouse, when they’re in a steady place and are actually in the midst of their work (instead of fretting up in their head all the time), is indeed able to tend to their own needs and get help with what they need help with.
They have that skill. They are very in touch with their needs and wants and wishes, and they aren’t shy about speaking up about it. So, I can trust that. I have to trust that.
The other part of the story (I now realize) is that I’m just tired. I’ve had a very busy week, and Saturday was a continuation of that. I’m still in the process of adjusting to my new job and the company, and if I dwell too much on the unknowns, it does a number on my head. So, I need to not do that. Just focus on the work in front of me, immerse myself in that, and get on with living my life.
Do what’s in front of me. Dwell on that. Take things a bit at a time, and just be smart about how I budget my energy. Don’t run around like a chicken with my head cut off, because it’s summer and it’s not going to be a beautiful day forever. Pace myself. Use my noggin and all the experience I have. Chill.
And ask for help when I can.
Things really do have a way of turning around… so long as I stay open to them, and I spend as much time — if not more — dwelling on the possibilities, instead of the dread.
None of us knows the whole story about what is and is not possible. None of us knows how much we’re capable of doing, contrary to all indicators. None of us has it all figured out, and we probably never will.
It occurred to me over the past few days, while walking and breathing, that doing conscious breathing would be an excellent way to spend the hour(s) you have to wait to be seen in the emergency department. ED visits consume an average of 222 minutes of waiting. That’s over three and a half hours. That’s time taken away from doing what you would rather be doing.
What a waste, right? Well, if you take the time there, to focus in on your breathing, to slow down your system, and chill out your sympathetic nervous system with mindful breathing that brings the focus away from all the terrible things that could happen and focuses it on your breath — the one thing you can be certain of — it can do you a whole lot of good.
How? By directing your state of mind away from you panic and into the areas of your brain that are more logical and more centered and better able to communicate with the doctors and nurses, and get them the information they need, to help treat you.
Time spent in the emergency department doesn’t have to be wasted. Nor does have to be consumed by fear and anxiety and dread. You have other options for how to direct your attention.
And if you direct it to your breathing, that can be 222 minutes well-spent.