I’ve been feeling a bit down, lately. Dragging. Drab. In pain. I’ve been having some tightness around my ribcage that really hurts when I laugh. I can’t remember doing anything to myself – – no recent injury. Just maybe sleeping on it wrong.
I’ve been feeling down, too. Just a low-level depression. The Catch-22 situation with my neuropsych — if I really go into great detail about how much help I need, then I get bumped down in the proverbial pecking order and end up stigmatized (and potentially looking at higher insurance rates, on down the line, if the current health coverage changes go through). But if I don’t enumerate all the different ways I need support, I can’t ask for it. Literally, it’s Catch-22.
I think I’ll read that book again. I think I read it years ago, and I need to read it again.
I really have to take matters into my own hand, in this regard. I’m not disabled enough to require outside help to function at a basic level. That can be arranged. I have the means to do that, and I have books and information at my disposal to expand my understanding about what’s going on. I need to just do that. Take matters into my own hands, and reach out to others for help with clarification.
I’ve signed up for some free online courses about the brain. I need to stagger then, so I’m only taking one at a time. I think I’m going to use those online courses — and access to the instructors — as a professional reference point. I’m not actually getting the kind of assistance I want from the NP I’m working with now, so I’ll branch out and cover myself in other ways.
As for my day-to-day, I need to get myself back on track. I haven’t been exercising as much as I should. I’ve been locked on target with some projects I’m working on — as frustrating as it is, my work situation is keeping me busy — and I’ve been sitting too much, moving too little. I have all-day workshops today and tomorrow, which I can easily do, just sitting down all day.
That’s no good. I need to get up and move on a regular basis. I have a lot of energy, and if I don’t move, that energy tends to “back up” like a lot of traffic trying to cram its way through a narrow space.
That can be fixed, though. I exercised more today than I have been, lately, and now I actually feel better. It’s amazing, how much a bit of movement will do — especially lifting weights. Even if they’re not very heavy, still, the motion and the resistance is good for me.
I’m also working from home today, so I can walk around the house while I’m on the phone. That’s the magic of a mobile phone — it’s mobile. Tomorrow, I can walk around, too. I just need to listen in, so I can walk around the building while I’m listening. It’s not hard. I just need to do it.
And so I will.
I’m feeling better better today about my future prospects than I have been, lately. I got plenty of sleep, last night (almost 9 hours), I did a full set of exercises, I had a good breakfast, and I’ve got a path forward charted for moving forward.
I believe I can trust myself, and that I have the ability to see where I’m falling short. I trust that I can research and reach out for ideas to address issues that arise. The main thing is really to keep on top of things. Take responsibility for myself. Do what I know I need to do. And just keep moving on.
The world’s a big place with a lot of different options. I just need to make the most of the opportunities I have, keep focused on my end goals, look for opportunities, and keep moving forward.
Will the world step up and help me with my problems? Not if I don’t ask.
Do I need other people to help me at every turn? Sometimes yes. Sometimes no. The main thing is that I help myself, using what assistance I’ve gotten from others and the resources I have on hand.
I’m in a very fortunate situation, where I have the ability and the available resources (time, energy, attention, interest — even if money’s missing) to take care of myself. So, I’ll do that.
A new chapter is on the way, and I’m actually looking forward to what’s to come.
I have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:
In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…
It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.
Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.
Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.
The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.
Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.
But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.
The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.
And that’s fine. It’s just fine with me. So… onward.
Days are getting shorter — and colder. Nights are getting longer — and colder.
This is actually an excellent time of the year for me, when I can focus in and really think about where I want my life to go, and how I want to live it.
So long as I can keep out of the slump, which invariably comes with the end of the year.
Like many people, I look back on the past year and measure myself against my intentions of 12 months ago. Last year, this time, I was pretty sure how things were going to go. I had a 2-3 year contract, I was getting up to speed with my job. I was adjusting and fitting in pretty well. And things were looking up.
Till they weren’t. And then they were, again. My contract changed – cut short by a change in business plans that nobody really told me about. That freed me up to go looking around for What Else I wanted to do. And I found a fantastic opportunity doing the kind of work I wanted to do.
Now that may be changing, as well. I really don’t know. Because just like last year, they’re not telling us anything. And people at work are getting down and depressed. Nobody is wishing each other happiness in the holiday season. I wished everyone Happy Thanksgiving in an email before I left, last week, and only one person responded. Some would say, “Rude”. I say, “Existential crisis”.
So, I’m a little down in the dumps, these days. I’m drifting in and out of depression.
Fortunately, I’m not depressed as frequently as I used to be. I used to really battle depression on a regular basis, especially during the holidays. Some years, I actually wanted to bring my life to an abrupt end. Clearly, I didn’t, but in years past, I wouldn’t have complained if I’d had my life cut short.
It’s been a while since I’ve felt that low, and that’s helped me just get on with my life.
But in a way, it’s more problematic now, because I’m out of practice, dealing with that stuff. And now when I fall prey to depression, it feels abnormal. Disorienting. Like there’s something wrong with me… When really, it’s just the time of year, and my schedule and routine are both out of whack.
I’ve been having headaches again. Probably because I haven’t been exercising like I should. Or drinking enough water. I need to get back to that. I walked the stairs a few extra times yesterday — three long, steep flights — so that’s progress. I’m also recovering from a week of being off my schedule, not having ample down-time, being over-social, and dealing with people’s “stuff” that I usually don’t have to mess with.
And things feel like they are dissolving around me. Job changes — who knows what will happen after they start the “business transformation” in earnest, at the end of next week? Personal changes — not having a doctor, and needing to find a new neuropsychologist. Money challenges. Marriage challenges — as my spouse continues their downward spiral that was arrested for a week, and now is back to the usual. And all the political stupidity that goes on, with everyone running their mouths and apparently making no effort whatsoever to try to understand others, or amend their own behavior to make a positive difference… or avoid war (of every kind).
I guess I’ll just take it day-by-day. Just handle what’s in front of me, and take as good care of myself as I can. I’m kind of losing track of what I’m doing at work, and it’s bothering me. I’m very scattered… partly because I’m anxious about what’s to come, and I’m tired. I have my notebook with my items I’m tracking and focusing on, and I need to fall back to that again, just keep it simple, and focus on the essentials.
And move. I don’t move enough at work. I work in a big building. I could take long walks to clear my head. I think I’ll do that today.
I also need to break up my day, when I have long periods of uninterrupted time. If I let myself just zone out, it’s not good. I need to keep myself moving, keep myself on track. It’s a mistake to let myself just zone. I need to really keep discipline in my life – go to bed earlier and let myself catch up with myself. It was a really long week, on the road, and I still need to recover.
So, there it is. I need to get back to my routine. Keep up the house. Do the chores, take care of business. I feel better, when I get things done. I also need to do things in shorter spurts — intervals of activity, interspersed with rest. Just use my head — and make a point of keeping disciplined through it all.
I have plenty of reasons to be depressed. And I know that there are biochemical reasons that people are depressed, including myself. But I know how to deal with them. I know how it happens with me. And I know what to do about it. I know what turns it around and gets me out of my slump. For me, biochemistry explains things, but it also shows me the way out. And the way out, is to keep to a schedule, really think about what I’m going to do for my days, be present in the moments, and stay steady. Stay clear. And know my limits, so when I need to take a break, I do just that.
Yes, things are a bit depressing, right now. I just don’t think sinking into depression is the best use of my time.
I have been so preoccupied this week with the work changes and catching up with old friends whom I haven’t seen in over a year, that I have not directed much energy towards noticing this season.
I’ve been tired — with that kind of cognitive and physical fatigue that is particular to brain injuries. My head has been looking for ways to make sense of it all… past, present, future… and that’s been taking up a lot of my time and attention.
It’s a double-whammy. On the one hand, opportunities like I’ve had in the past weeks are rare — having three days of solitude to clean out my garage and basement… having friends from overseas come to visit… being part of the beginnings of a corporate merger… These are over and above the usual speed bumps and wrinkles that populate my days and weeks. These are different, and they demand a special kind of attention — the sort of attention I actually try to avoid: drama, excitement, speculation, intense work for 12-14 hours straight, without much of a break.
But because of their nature, I have to just go with it. Get into it. Be a part of it. Allow myself to be swept along in the current – like a proverbial kayaker who gets dumped from their craft in the rapids — as you get washed along in the current, keep your head above water, keep looking forward, and keep your ass up and out of the way of rocks.
The main thing is to keep your head up. Don’t drown. Keep looking forward.
One thing you learn from TBI, is that when it comes to activities, you have to pick and choose. I suppose it’s true of anyone who expends a lot of energy in their activities… or who is very effective in what they do. You mustn’t squander your energy on things that don’t matter. But especially with TBI, you have to be extra careful.There is literally only so much you can do, and if you try to do it all, you end up wiping out your reserve of extra energy — and then you have to spend even more time building back those reserves.
Because lack of energy and fatigue just make everything worse. It siphons off your cognitive abilities, it depletes your stores of happiness and joy, and everything can feel like a slog.
Even the good stuff, the fun stuff, the stuff you know you should be grateful for and happy about.
For me, that’s probably the most depleting thing — knowing that I should be happy about things, knowing I should be pleased and excited and uplifted… but just not having the energy for it. Even energy spent on good things, is energy spent. And building it back is not a simple matter of sleeping in on the weekends. For every two days of extra energy I burn through, it takes two weeks to build it back. And if I don’t have two uninterrupted weeks (like this past month) and exciting things keep happening to me, well, then everything gets that much harder.
In what ways?
I get more distractable. I lose my focus and find it next to impossible to concentrate on the tasks in front of me. I get caught up in all sorts of side activities — which seem so important at the time, but are not actually relevant to what I’m supposed to be working on.
I get more irritable. I can’t deal. I get cranky and snappy like an arthritic terrier. I get anxious and difficult to live with — with others, and with myself.
I get less attentive. My attention gets fuzzy, and I stop noticing details – like the leaves turning outside, or just how beautiful everything has suddenly become. Everything around me seems wrapped in hazy gauze, and my senses are not sharp. My sense are so busy just trying to attend to the basics, that the extra special things in life slip by me very easily.
Joy sorta kinda evaporates from my life. I know (intellectually) that I have a lot to be grateful for, and I know there is so much that I have to be glad about, but I just can’t find the joy. It’s nowhere to be found. And any attempt at reasoning with me to get me to find that joy… well, that just makes me feel stupid and ungrateful. My neuropsych tries to do this all the time, and the net result is that I feel stupid and short-sighted… rather than realizing that I’m simply tired, and letting it go at that.
It gets hard to sleep. The more tired I am, the harder it is to relax and sleep. When I should be getting to bed early, I end up getting on Facebook for 90 minutes — and completely blowing past my normal bedtime. And you guessed right — fatigue becomes a self-fulfilling prophecy where I get more and more tired and wired, as the days wear on. All of the above continue to escalate. It’s awful, and it’s very difficult to stop it.
I end up in a downward spiral. Unless I can get a bunch of good nights of sleep, I’m toast. Things get worse and worse, until I finally just Give Up. And it turns out, giving up is the best thing for me. Some nights, I go to sleep hoping I never wake up again — I am feeling that depleted and used-up. But the very act of completely abandoning hope actually makes it possible for me to rest. And in the morning, everything looks quite different than the night before. Usually, anyway. Some mornings, I’m still not convinced I want to keep going.
So, fatigue is a thing. It’s a very real thing. And if I don’t stay alert to it, and recognize when it’s getting to me, it can get the better of me, which is never good.
For today, I know I’m tired. I have a full day of things to do, but I can pace myself and take my time… really soak up this fine fall day, and enjoy what I come across, as best I can. Seasons change. It would be a shame to completely miss this one, because I’m distracted.
Constantly striving and struggling takes a toll. It takes an enormous toll, in terms of energy and insight and being able to enjoy your life. When you’re constantly GO-ing, when you’re focused on being active and reactive and pro-active, you lose sight of the good that you can let in.
Sometimes you lose the ability to let it all in. There’s a lot of good in the world, but we can be so busy fighting and pushing, that we’ve got nothing left for just sitting back and letting the good things be good — and enjoying the fruits of our labors. It’s no fun, being literally unable to reap what you’ve sown.
It’s like being a farmer in a country that never has a summer or fall. It’s work-work-work, year-round, without any hope of harvest. I used to know a farmer who lived in a northern area that had something like three months of growing season. There was snow on the ground from September till May, and then the ground had to thaw. He was not a happy farmer. He was exhausted. Eventually, his barn burned, and he had to move.
I’m a bit like that farmer — but sort of by my own making. I have been pushing and striving and struggling for such a long time. Damage control. Chasing my dreams. Making the products of my imagination become real. And all that pushing has seriously worn me down… to the point where some days I can’t see the point of anything, anymore.
Then something occurred to me yesterday, when I was feeling down and blah:
I am actually living my dream.
See, when I was a kid, all I wanted to do, was be a writer. I wanted to write things that were helpful to others and provided insight into everyday life. I also wanted to be free of editorial control, so others would not tell me what to write, what to say (or not say), and I could do so on my own terms.
My goal for many, many years, was to become a freelance writer. And for a while I was doing that. But I ran up against problems with editors and schedules, and I could never seem to finish a job properly. Whether it was a freelance editing job, or it was technical writing, I was just not good at being independent and keeping it together.
I wanted to be independent. How I wanted that! And for a while, I was. On and off, I have “done my independent thing” and taken contract jobs, while managing freelance projects on the side. That’s what people did in my world of technology. And that’s what I did, too.
But it was always a struggle. And my writing wasn’t helped by the pressure to make ends meet.
For so many years, I felt like a permanent job was a millstone around my neck, that I was going to be pulled down by companies that didn’t know how to run themselves. That was actually the case for years, because I worked at companies that just couldn’t seem to figure it out. Now those companies no longer exist.
And for some reason, I thought that ALL companies were like that. Because that’s all I’d ever known.
So, for a long, long time, it was a double-whammy of pressure to make ends meet with companies that couldn’t keep their act together, the pressure to make it on my own — on m own terms — and the struggle to find the time and opportunity to write. I have written almost daily for decades, now, and it’s the one constant in my life. So, dealing with the pressures at work and all the existential difficulties that go with trying to make ends meet, keeping the dream of writing alive was pretty much a challenge.
It’s not that I couldn’t write. It just didn’t feel like I was a writer. It felt more like a task, than an art, and I lost touch with so much insight, over the years, because I was so stressed. If it wasn’t problems at work, it was problems after another concussion — and the two fed each other, actually. I didn’t have the same sense of writing that I’d had in my 20s, before I had the mortgage and disabled spouse to provide for. It was nowhere to be found, and I thought the only way to get out of that was to get going on my own terms and live the dream of total, complete independence.
Well, now things are very different. And although the company I’m working for now is going through its own reorganization (who isn’t?), and my job and position may be very different in another 6 months, I feel more independent than ever before. It’s not so much the company, as it is my position. The job I have now is truly on par with the work I’ve done in the past, which is nothing short of amazing. I thought that sort of position would never come ’round again. I thought I was toast. But now I know I’m not, and I have the opportunity to focus on a whole new type of work that demands expertise and skill in much the same way that my programming did in the past.
And the best part is, while I am bone tired by the end of the day, it’s a good tired, and while it does wear me out, it also energizes me and gives me real hope for my future.
Plus, I can write again. I mean, I have been writing — a lot — for a number of years on this blog. And there’s no lack of projects I have in various stages of completion. But now it actually feels like I’m writing. It’s actually sinking in.
It’s important to let it all in, if only every now and then. It’s the thing that lets us see that all we’ve been working for, is actually paying off. That there is something to show for our efforts.
It’s important to let that happen.
So our world can open up again, and we can know that all is not in vain.
Lately, I’ve been feeling kind of “blah” — I’m engaged and involved in my life, but I don’t feel like I have a ton of joy in each day. Things feel more like a slog than anything else, even though I logically know that there’s lots for me to be happy about and grateful for.
It’s disorienting… because even though I know that I have many reasons to feel joy, I don’t. And it seems like depression to me, although I know it’s not. I know what depression feels like — this is something different.
But surprise! Here’s a tasty new piece of info that explains a lot. Here’s the scientific abstract (from a paper I can’t afford to download):
Studies of subjective well-being have conventionally relied upon self-report, which directs subjects’ attention to their emotional experiences. This method presumes that attention itself does not influence emotional processes, which could bias sampling. We tested whether attention influences experienced utility (the moment-by-moment experience of pleasure) by using functional magnetic resonance imaging (fMRI) to measure the activity of brain systems thought to represent hedonic value while manipulating attentional load. Subjects received appetitive or aversive solutions orally while alternatively executing a low or high attentional load task. Brain regions associated with hedonic processing, including the ventral striatum, showed a response to both juice and quinine. This response decreased during the high-load task relative to the low-load task. Thus, attentional allocation may influence experienced utility by modulating (either directly or indirectly) the activity of brain mechanisms thought to represent hedonic value.
What this tells me is that:
When studying how well people feel, scientists have usually just asked the people and taken their word for it.
Scientists have been looking for a more reliable way to measure this (seems wise, as we often don’t know our own minds). They used fMRI.
A group of subjects were given things to drink that tasted good (juice) and bad (quinine), and fMRI imaging showed that their brains registered a reaction to each.
The thing is, when the participants were working on a more mentally demanding task, their brains didn’t register as much reaction as when they were doing something easy. So, their experience was dulled — especially in the part of the brain that experiences pleasure.
And how does this affect me? What does it mean to me?
Well, I’ve been troubled somewhat by not feeling like I’m enjoying my life as much as I could (or should). There has been a lot going on with me, lately, and a lot of it is good. It’s wonderful. I am incredibly fortunate and blessed. However, I don’t really feel like things are going great.
It’s weird. I feel ungrateful and unaccountably “flat” about much of my life. I know that things are going really well for me, and I have so much to be grateful for. And I am grateful. I logically know that I am incredibly fortunate, and I appreciate that.
But I’m just not feeling it.
And it’s throwing me off.
What this research tells me is that it could be because I’m working so hard cognitively. I’m really pushing myself mentally, to pay attention to a lot of things, and it might be keeping me from enjoying the things around that I deserve to enjoy. I’ve really worked hard to get where I am, and I’m in a position to enjoy those experiences. But I don’t have the enjoyment.
Perhaps because my brain is too busy working at tasks to “get” that there’s more to life than work and progress.
I’ll have to think about this. But not too hard. I need to find ways to lighten the load on my brain.
So, you hit a rough patch. Maybe you literally hit something. Or it hit you. Or someone hit you. Or you got roughed up in some other way by this thing called Life.
It’s not fair. And it’s not fun.
No doubt about it.
And now you’re left feeling like you’re damaged. Broken. Down. For the count, or permanently.
I’m not going to give you a think-positive pep talk and lecture you on happiness being a “choice”. I heard a conversation like that yesterday while I was waiting for my turn at the chiropractor. Someone in the waiting room was depressed — really struggling with that wretched sense that comes with depression — and one of the other patients (who apparently helps others with alternative healing modalities) started in on this lecture about how you have a choice between depression and happiness. You can choose to take action, or you can choose to “wallow” – not in those words exactly, but that was the gist I got.
I kept my comments to myself. I was busy reading an eBook about neuroplasticity, which was far more useful to me. And I did keep my eyes from rolling, as the person trying to help started in on this (seemingly) oversimplified explanation about a technique that supposedly helps “break up old patterns”. But it got my blood boiling a little bit, hearing all the platitudes that they picked up along the way in who-knows-how-many Saturday morning workshops about all these different modalities.
I managed to put it out of my mind after that. I’m just now remembering it.
And I think about all the folks in the world who struggle with some hidden difficulty of one kind or another… who are just so beaten down by it, without a lot of fresh ideas about how to get past it, or manage it. The last thing I want to do is add to the heap of suffering by waxing eloquent about how choice trumps everything, we make our entire world with our thoughts, we manifest the lessons we need, etc. There is some truth to that, but some days, life just roughs you up and you have to work with what you have.
When you’re just trying to stay functional, all that talk is like serving goose liver pate to someone who hasn’t eaten in a month. It can seriously screw them up, when all they really need is some basic nutrition, eaten slowly, so the digestive system has a chance to catch up with itself. If you go too fast, or the food isn’t right, you can do harm.
Not to mention it can sound pretty uncompassionate and clueless about the true nature of certain brands of suffering.
Anyway, enough complaining about that. In my own life, there have been plenty of ups and downs. Bumps in the road. Sinkholes, really. And I’ve spent a lot of time down in the pit. I don’t like to think about it nowadays, but I used to be intensely depressed. A lot. To the point of suicidal thoughts. I didn’t want to live anymore. There didn’t seem to be a point to anything at all. I felt useless and clueless and lost, and I had no idea what the true nature of my difficulties was.
It’s been several years since I felt the kind of desperation and despair that used to pull me down. The last time I seriously considered ending my life, was 3 or 4 years ago, when I found out some things about what was really going on in my marriage. There didn’t seem to be any point to continuing, because being a capable spouse with a loyal partner is a huge part of who I am and how I define myself. When I realized that things were not as I imagined, on both counts, I decided to drive out to a bridge within a day’s drive of me that spans a massive chasm with a river at the bottom. It’s not hard to climb up, and there’s a parking lot at one end, so I could just park my car, leave a note (or not), climb over the railing, and jump to the end of my suffering.
That’s the closest I’d been to actually killing myself, in over 20 years. Back when I was struggling after a couple of automobile accidents (I got rammed two times in the space of a year), I was so low, screwing up on different jobs, lost, dazed, disoriented… I was planning on killing myself by driving head-on into oncoming traffic. I had the location all picked out, not far from my home, where I knew traffic sped up and there was a blind corner that everyone flew around. The health and safety of others in the oncoming cars never occurred to me. I just wanted to end it. Fortunately, I got some help and found people who could help me before I could act on it, but that sense of just wanting everything to be over was very other-worldly. And if I hadn’t gotten the right help at the right time, I wouldn’t be writing this, right now.
Anyway, over the years, severe depression has followed me — often following TBIs… the “mild” kind, no less. The world dramatically under-estimates the impact of mild traumatic brain injuries, just calling them “concussions” and shrugging them off, like they did with those two soccer players in the FIFA Women’s World Cup. Because you can’t see what’s going on inside the skull, they think it’s not that big of a deal. If you can get back up and walk, you’re fine, apparently. And that mindset includes the folks who sustain the TBIs. Because our thinking is addled. Confused. Distorted. And we have about the worst judgment you could ask for — especially when it comes to making decisions about whether to play on, or not.
And for many of us, with all that confusion comes depression. Frustration. Despair. We just don’t know who we are or where we fit, anymore. Likewise, the people around us don’t understand who we are or where we fit, and because their own identities are tied up in their interaction with the person we used to be, they lose part of themselves, when we get hurt.
I believe that’s why so many people abandon folks with TBI — we are all so interconnected, that our identities are tied up in how the people around us are, so when those people change, we lose part of ourselves, as well. We don’t know who we are, anymore. It’s uncomfortable. It’s a scary thing. So, we drift away, rather than hanging in there and finding out who else we may all become, as our lives unfold.
Anyway, I realize I’m really going on, here. I started out wanting to say:
Life throws some tough punches, at times. So, what do we do with the aftermath?
I started this post wanting to explore the ways that we can use our own difficulties and suffering to reach out to others and help them. I guess maybe I am still saying that. Life is a challenge for so many, many people, regardless of how they look on the surface. And sometimes the folks who seem to have it the most “together” are the ones who are carrying the heaviest load of pain and isolation. There’s no isolation like having everyone around you believe — or expect — that everything is fine and cool, and you’re doing just fine… when you feel like you’re dying inside.
For me, it comes down to this — because I know how hard it can be, because I have stood at the brink of my own self-destruction, because I have been through fire after fire, struggled through so many seemingly impossible situations, and I’ve pieced things together for myself, even while the rest of the world refused to see what was going on with me (and still does, in fact)… it makes it all the more possible for me to accept others’ limitations and not jump to conclusions about how capable or “well” they are.
As someone dealing daily with hidden issues that I am either too proud or too busy or too confused to reveal and discuss with others (or even sometimes acknowledge), I can never be positive that the person across from me isn’t in the very same (or similar) situation. It could be, we’re both putting on a good show.
Knowing what I know makes it possible for me to hold my tongue and not lash out, when people are trying to be helpful (and doing a sort of bad job at it). It makes it possible for me to be patient with others who are “under-performing” or aren’t living up to my expectations. It makes it possible for me to see past the scars and disfigurement to see that there is really a person in there who is very likely smarter and more capable than I can imagine, and who has been dealt a rough hand they can’t help but play.
It also makes it possible for me to encourage others to expect more of themselves, to do more with themselves. Sometimes you just have to cut the B.S. and get on with it. There is no point in sitting around feeling sorry for yourself, when there is a whole world out there waiting. And while my experience makes me more patient in some ways, it makes me more IMpatient, in others. Because after all the crap I’ve been through, I know from personal experience just how much is possible, if we get the right information, really apply ourselves, and stop making lame excuses that are just meant to get us off the hook and relieve the pressure, rather than addressing root causes.
I had a very taxing day, yesterday. In the midst of telling my manager that I was leaving (and having them freak out, albeit in a professionally muted way), and also trying to get work done, so that I can wrap everything up for folks before I go, I had the constant interruption of people stopping by or sending me messages or emails or whatever, so that they could find out what was up… process… congratulate me… etc.
Everyone has been really great about it. Of course, we’re only in the early stages of grief.
We’ve only gotten to the first stage (though I know everyone handles loss differently, so the order can be mixed up), and I’m expecting anger, bargaining, and depression to ensue before long.
As long as I’m prepared, that’s the main thing.
The issue is, all the interruptions, all day long, the emotion, the storytelling — getting the sequence of things correct, so that I’m telling a consistent story and don’t sound like I’m lying to people — it’s exhausting. Trying to focus, while people are all worked up and want to talk… good grief, it’s tiring. And by the end of the day, I was wiped.
Which is part of the reason I burned supper… then had a minor meltdown when my spouse started yelling at me… then got all bent out of shape about that signalling the permanent end of my marriage, because I just couldn’t take being yelled at when I’d had such a demanding day…
I felt a nasty migraine coming on, and retreated to my bedroom with the lights off and focused on my breathing and slowing my heart rate, to head the migraine off at the pass. It worked. And my spouse came to find me to talk things through because it made no sense for me to go to bed angry. And then I went downstairs and watched “Happy-ish” which is my new favorite show, because there are so many parallels between the main character and myself.
In the end, we finished the evening on a much more normal, loving note. I got a good night’s sleep and woke up to a glorious day. Glorious! as my elderly aunts used to exclaim, when I was a kid.
I miss those venerable elders. I miss them a lot.
Anyway, while reading The Ghost In My Brain, I found a lot of similarities to the author’s experience and my own — the nausea that sets in when people are talking to you… the balance problems… the fact that driving is actually okay, when you’re not cognitively drained (it’s actually a relief)… preferring blurry eyesight to glasses that make objects sharper, but don’t address the full spectrum of vision issues… and having everything be in slow motion when talking, because there are all sorts of additional processes that need to take place in the background, while you’re working through what someone is saying to you… and then there’s the trouble planning.
The author talks about how he had regular appointments with a Dr. Miller to work through daily logistics with TBI, and he was often not 100% sure he was supposed to be there. I used to do that all the time with my neuropsych, for a number of years. I was pretty sure I was supposed to be there, but I wasn’t 100% confident, so I just went — and if I was supposed to be there, then that was cool. If I turned out to be there on the wrong day, I was prepared to turn around and go home.
Fortunately, we always had appointments on Tuesday afternoons, so it was consistent. If it was Tuesday, then I’d go to their office and wait in the waiting room. Sometimes I would sit in the waiting room for quite some time, if I got there a little late. I wasn’t sure if I should go knock on the door, or if they would come out to find me. Eventually, I got in the habit of knocking on the door — the thing is, I now realize, I would avoid it, because it hurt my ears when I knocked. Driving an hour through evening rush hour traffic really took it out of me, so my hearing was on HIGH. I’d just suck it up, though, and knock. The discomfort of the knocking, though, was actually preferable to the auditory shock of hearing their door open suddenly. It always startled me, because they have one of those noise-dampening brushes across the bottom of their door, and it makes a really loud noise when it opens.
At least, it’s loud for me.
Anyway, all the discomfort aside, I’m considering following up with a neuro-rehabilitative optometrist to see if I actually have vision issues that are making my symptoms worse. After I was hit in the head with the rock when I was 8 (a year earlier I’d fallen down a flight of stairs and temporarily lost the ability to speak), I developed double-vision (diplopia, I think it’s called). I was taken to an eye doctor who prescribed reading glasses, and I’ve worn them ever since.
In recent years, I’ve actually opted for not wearing my glasses whenever I can. It’s more comfortable for me. My glasses help me see things in the distance just fine, but I prefer to do without them. Sometimes I will even drive for short distances without my glasses (if no one is around and the road is empty and runs straight ahead). I have been thinking it’s because I just can’t stand having them on my face… but now I’m wondering if maybe they are actually making it harder for me to see, because they are not allowing my eyes to get the kind of light I need to get.
Reading The Ghost In My Brain, I am finding so many similarities — especially with how vision and balance are so closely connected — that I think it makes sense to follow up with my vision. Just get my eyes checked out for that other aspect. Apparently, there are three ways our eyes help us — regular straight-ahead vision, peripheral vision, and then connections with sleep-wake cycles, balance, hormones, neurotransmitters, posture, etc.
And I wonder if maybe so many of my logistical problems — which I have never been able to articulate well to anyone, because they make no sense to me or anyone else — might have to do with vision issues. From the time I was 8. So, for over 40 years. If this is true, and my visual systems have been impacted, then it makes a lot of sense why I perform so high on visual-spatial tests. I’ve had to develop more abilities to offset the deficits I got from those TBIs. Add to that even more blows to the head, and you’ve got yourself quite a recipe for a very interesting life.
Additionally, I’m looking into the Feuerstein Method, which is a way of “learning to learn” — finding your strengths to offset your weaknesses, and restoring functionality that I really need to have, but which has eluded me.
My neuropsych has been incredibly helpful to me, in terms of helping me sort through all the psychological clutter, helping me retrain my executive function and beefing up my gist reasoning. The thing is, they take that approach, which is psychological, and the physiological aspects fall by the wayside. At least, that’s how it seems to me. And anyway, I do a really poor job of communicating everything that’s going on with me, at times, because I have a long drive to get to them, at the end of usually challenging days, and I’ve been so stressed out over the years with all my old sh*tty jobs, that I haven’t had as much bandwidth as I’d have liked to.
I do a danged good impression of someone who’s got their act together. Because I have to. If I don’t, I can lose my job. I can lose my house. I can lose everything, and my spouse will lose it all, too. So, keeping up the appearance of being on top of everything is my top priority.
Of course, that can backfire, because then you can’t always reveal the areas where you need help, when someone is there to help you.
But anyway, that’s another blog post for another day.
Right now, I’ve got some new lines of inquiry to follow, and that’s super cool. I also have some exercises I can do to help me — Designs for Strong Minds (the site of the rehab person who helped Clark Elliott retrain his brain) has a bunch of exercises at http://www.dsmexercises.com/, and I went ahead and paid the $13.99 for the full suite of exercises. It’s easier and quicker than trying to piece things together for myself. Plus, it’s a deal, because individually, the collections of challenges are $9.99 each.
Even the most basic ones pose some issues for me, although I’ve been scoring 87% or better. A number of my choices have been lucky guesses. I won’t be happy until I can score 100% without doubts. Then I can move on to the next batch. There are exercises for NASA rocket scientists, and other pattern matching things.
And that reminds me about my Dual N-Back training I used to do regularly. I need to try that again. I was doing Dual N-Back training when I was learning to juggle. Now I know how to juggle, and I wonder if my Dual N-Back training is “sticking” as well.
New tests for a new day.
Interspersed with lots of rest.
I’m pretty happy about the progress I’ve made in my life, relative to where I was 10 years ago. Relative to where I believe I could be — and should be — I’m not happy. I know I can do more and I know I can do better. Getting there is the challenge.
And it finding out if I have vision issues that can be fixed, could be an important next step.
So, I woke up at 6, after getting, oh, about 6-1/2 hours of sleep. Not great. I’m still thrown off by the overnight work on Fri/Sat night. Ugh.
And I had to get some things done, that I had neglected for … oh, months.
And I was in a funk about my spouse always snapping at my heels about every little thing. It’s like living with a bee constantly buzzing around my head, sometimes. You know, how you’re sitting there, relaxing and enjoying a sandwich, and then this bee shows up and starts buzzing around you, trying to get a bite of your sandwich, and you don’t want to get stung, but you can’t get rid of the bee… and you try to ignore it, and you try to make space for it, and you try to not be bothered… but it’s still there, buzzing around… buzzing… buzzing…
That’s how it was, pretty much all weekend with my spouse. Aside from a few times when we were able to just sit and be and enjoy each other’s company, it was pretty much of a drain. Constant complaining. Constant worrying. Constant coming up with more things that need to be done — that I need to do.
Holy crap, was it tiresome. And all I wanted to do, was get away. Just leave. Put all this behind me. The constant complaining, the moaning, the worrying, the fretting. Oh my God, when will it ever end?
And it occurs to me that I really don’t want to live this way. I can’t spend the next 25 years of my life marinating in someone else’s misery. No way, no how. Every time my spouse starts to complain and bitch and get all dramatic, it has the same effect on me that someone lighting up a cigarette does. I used to smoke, 25 years ago. I know and hang out with smokers. But I can’t stand the smell of cigarettes, when I can’t get away from them. And that’s what it’s like, every time my spouse starts to complain and find fault and pick at every little thing.
Like they’re chain-smoking. And I’m getting a lung full of 2nd-hand smoke.
I think I’ll buy a pack of cigarettes, and every time they start up, I’ll just light one. They hate cigarette smoke — about as much as I hate their constant complaining and whining and blaming. So, to give them a taste of what it’s like for me, I’ll step outside and light up a cigarette whenever they start to complain and find fault and vent — basically throwing up emotionally all over me.
There’s a reason I have a constant headache. And it generally gets worse, whenever my spouse is around.
I think I need a shield. Or full body armor.
So, this morning as I was trying to get things done — and my spouse was yelling at me for being to loud and waking them up (I get clumsy when I’m tired and out of it, and I bump around a lot), the thought occurred to me that I could just walk away. I don’t have to stay in this situation. I could carry on elsewhere, on my own, and I could be very happy alone. I’m the one who does most of the work in this relationship; they’re pretty much freeloading on me. So, stepping away and just living my life without someone draining the life force from me would be a welcome change.
It would be so nice to just have some peace. It really would. And I’m at the point now, with my birthday just around the corner, where I can’t figure out why I stay around, to get dished the same helping of neediness and negativity, every waking hour.
I’m not staying because I haveto. I’ve stayed for 24 years because I’ve wanted to. But I want to less and less, with each passing day.
I do all the work, and they sit back and enjoy the ride.
Am I missing out on all the good that’s possible for me, because of some misguided loyalty to a person who just uses me, day in and day out, and then tries to make up for it by setting up a nice birthday for me? It doesn’t make sense.
So, what do I do?
I don’t really want to leave. It crosses my mind. I don’t have a spouse. I have a dependent. A ward. And I’m sick and tired of it.
Then again, this is a terrible time to make any decisions. My birthday is right around the corner, and that’s messing with my head. I also want to keep things stable for the next while and enjoy my time away, next weekend. My work projects are coming together, and that’s feeling good. I’ve also realized that I really don’t want to leave my current job. If the people I’m talking to actually offer me a buttload of money and benefits that make it all worth it, of course I’ll consider it. I might even do it. But I don’t have to leave. I’m good where I am, and I can stay here for the duration of my contract till the end of next March and be good with it.
The main thing is, I need to adjust my own attitude and how I relate to the rest of the world. If my spouse is miserable, that’s their business, not mine. I don’t have to get dragged down by it, and I don’t have to let myself be tainted by their negativity. I can live in a completely different world and leave them to theirs, without needing to turn our lives upside-down. If I did go, where would I go? What would I do? I like where I live, and unless I moved out of the country, I can’t think of anywhere else I’d rather live.
So, enough of the burden that I take on, myself. Enough of that. I have a choice about how I will live my life and think about things. And I choose to be happy and stay the course. If my spouse chooses to join me, then fine. But I’m not choosing to join them in their abject misery. I know what it’s about — it’s because of their upbringing. I did not have that degree of abuse and neglect in my life as a child, so why should I experience life the same way they do? We both know how to deal with panic/anxiety — why should I suffer because I’m the only one who’s making the effort to use the tools?
I work hard to keep positive and productive, but they can’t seem to be bothered.
It’s not fair to me. And it’s not realistic at all.
Happiness is a choice, and today it’s my choice. My spouse can do what they please, and they can live as they choose. It’s literally killing them in front of me, which is incredibly painful to watch. (And it’s probably a big driver behind me wanting to leave – so I don’t have to watch them in the final stages of their mental/physical breakdown/demise.)