The loneliness of the long-distance TBI survivor

lonelyTonight is a lonely, lonely night for me. I felt it, driving home. I think it’s the change of clocks, the loss of that hour of sunlight, the way my life does not shift along with the time, but I have to adjust myself and my life to fit into that change.

It’s hard.

It feels like everything is dying around me. In truth, the natural world is simply going through its cycles. If I went to Brazil, it would be turning to spring, right now. Maybe, when I am much older, I will migrate south of the Equator, when fall starts to arrive. No more autumns… no more of that. And then I will come back north, when it starts to turn to autumn there.

It’s an idea.

Work is very strange, these days. People are getting attitudes about the merger. It is to be expected. They are also having territorial wars. That is to be expected, as well. My position may be shifted to another group. I was expecting that, to be honest, but I really like my current group, so I’m in no hurry.

I stay later than everyone, because I get in the office later than everyone. Plus, I love the work I do, so it is like play for me. Everything works faster at the office, which is why I am there. I’m happy.

But today I felt lonely. Isolated. Irritated. Like I was falling behind.

I left the office an hour earlier than usual. But driving home, the traffic was terrible. That’s why I leave an hour later than most people. I miss the traffic. It’s better that way.

And while driving home, I was overcome by this intense sense of isolation. Like the whole of life was passing me by, and I didn’t have any meaningful connections with anyone I really felt like I could get along with. Even my neuropsych, whom I have been seeing for 5 or 6 years, doesn’t seem like someone I’d get along with outside of the sessions we have. I just talk to them for an hour, once a week. That’s it. One hour out of 24… one day out of 7. That’s not very much at all.

Plus, that hour with them doesn’t seem to make much of a difference, when it comes to the difficult things in my life. In terms of discussing my work, it’s great. They are very helpful with professional subjects. They support me in ways that nobody else I know can, or does. But when it comes to my personal experience of everything just sucking so terribly, the depression, the upsets, the disconnects, the meltdowns, the confusion, the malaise, the sensory issues… they are really no help at all. They’re worse than no help. They actually hold me back from understanding what’s going on inside. They minimize my experience, dismiss my concerns, and tell me I’m just taking the wrong attitude. I’m fine. My faculties are fine. I’m exaggerating. Again.

If I gave it a lot of thought, I’d blow up. But usually when I meet with them, I am so wiped out from a long day’s work, I haven’t got the energy to fight. So, I leave it alone.

I talk about work. And everything gets better.

Tonight on my way home, I took a detour around the traffic jam through a town where a former friend and I used to meet for breakfast. We had an on-again-off-again friendship, and they did not treat me very well, a lot of the time.But we had some things in common, so I overlooked it.

Until I couldn’t anymore. They were just so obnoxious, sometimes, telling me how much smarter and better educated they were, than I was/am. I wrote them an email saying I couldn’t have anything to do with them unless they treated me better. They answered. But I did not have the courage to read their reply. Years passed before we had contact again. Then we were back in touch for a few months. They had a brain injury from surgery that they went through, and maybe that’s why they treated me badly. I could look past that.

Then they disappeared.

I don’t know what happened to them. I think I will email them now, to see if they are still around.

Done.

Anyway, I think I’m just very tired from this week. That always puts me in a funk. And I have been working very hard, so of course my brain is tired. And when my brain is tired, nothing seems very good.

At all.

So, I’m feeling lonely. Isolated. I have no energy to go out and get connected with live people. This is why TBI is so isolating. We barely have energy for ourselves, let alone socializing. Maybe a solution would be to have all the people with TBI live in a community where we could just hang out… and when we’re tired, we just get up and go back to bed.

Wouldn’t that be amazing. To just go back to bed whenever I’m tired. Impossibly amazing.

But I’m not holding my breath.

People at work tell me to go home. Don’t stay so late. I have done contract work for so long, I’m used to putting in my hours, no matter what. Pushing through. Getting my hours in. Topping off the clock. But nobody else seems to care about that.

So, I left early tonight.

And I got stuck in traffic.

And I felt terrible, all the while.

Maybe I’m a workaholic. That would not surprise me. My work, though, is the one thing that makes my life meaningful and pleasant. It’s a pleasure for me to work. Why would I not? I have no kids. No energy for that. Work fills a need that most people fill with socializing or drinking or drugs. Or their families.

Me? I have my work.

Tomorrow I paint some more.

And then it’s Sunday. And I am OFF. I think. I have some things I need to get done, in order for that to be true. No, I’m not off on Sunday. I have chores to do. Yardwork.

So, I guess I’ll do my virtual vacation thing — where I just decide to let the world go pound sand, and I don’t care about anything or anyone. On purpose. I’m not being mean. I’m just going on a mental vacation.

Because it is lonely. And I feel alone.

And I need a break. From people. From everyone. From it all.

Making the most of… everything

Focusing on the good… trying, anyway

Well, my time off is winding down. It’s Friday, and it’s my last day off work for quite some time. It’s been a good week, although being off my usual schedule has proven to be both a blessing and a real challenge.

It’s been so great to get things done that I’ve been thinking about for quite some time. It’s also been great, getting some time in, just thinking things through, focusing in on what I want to do with myself this coming year, and getting clear on what I do NOT want to do.

The challenge has been spending a lot of time with my spouse. I’ve mentioned their anxiety a lot of times, so I don’t want to belabor the point. Suffice it to say, it’s not easy living in close quarters with someone who is afraid of their own shadow and has anxiety about every little thing, and spends countless hours stewing about their anxieties to justify them — and amplify them.

It’s pretty taxing for me to deal with their constant anxiety. It’s a total drain, and I end up fatigued — and incredibly cranky. It’s not much fun for either of us. I just need to remember that they’re not 100% like they used to be. They’re declining, and they need some extra help and assistance and patience. I just wish I didn’t get so exhausted by the whole thing.

Whew! In that respect, it’s going to be good to get back to work. I’ve caught up on my sleep, somewhat, and I’ve gotten a lot of ducks in a row, so now I can move forward with steady steps and progress. The main thing is, I’ve had time to think… and walk around in the woods while I’m thinking. That’s gotten my head on straight and kept me from veering off in a bazillion different directions. And that, in itself, is a very positive step for 2015.

I’m a little irked that I have to go back to work on Monday. But I’m also glad. I’ve missed the company of my “work tribe” and also the daily routine. If I had my own business and a regular routine around my own endeavors, it would be one thing, but this past week has been a bit of a mad dash to get in as much “extra-curricular” stuff as I can, while I can. Having a regular schedule, with a regular sleeping pattern is also very important, and I’ve had a few late nights, this past week, which have thrown me off. Including New Year’s.

That’s one of the reasons I really hate New Year’s. My spouse wants me to stay up, but I just want to go to bed at 10:00. One year, I got to do that, and it was heaven. But with my spouse… different story.

Anyway, in a few more days I can go back to my regular schedule, and it’s not all that bad. I’ve gotten my head screwed on straight about my priorities, and I’ve broken down a bunch of larger undertakings into smaller bite-size pieces, so I’m not so overwhelmed with all the details. I have places to start, and I’m starting. Heck, I’ve more than started. I’m well on my way. And I’ve made a good beginning already. I’ve been geared up for 2015 for a couple of months, now.

So, onward! I’m doing a road trip with my spouse today. We’ll see how that goes. The two of us are pretty tired of each other, right about now, but this is our last day to spend the whole day together. So, we might as well make the most of it, put our differences aside, and just enjoy each other’s company when we have it.

Today I don’t have to DO anything. I can just be. We’ll see how that goes 😉

What an annoying session

Urg

So, I went to see my neuropsych yesterday after about a month away, and they really annoyed me. I almost walked out a couple of times. I think they were all jazzed up because of another patient who was having some trouble, just before my appointment. In the past, when I’ve showed up at the end of what was a long and challenging day for them, they’ve been pretty dismissive towards me and my concerns.

As though I don’t have any problems… compared to their other patients.

Yeah, well, I can go anywhere and have people tell me, “You look fine – there’s nothing wrong with you!” I don’t have to cut my work day short and drive 45 minutes through evening-rush-hour traffic to a little office to be told that I’m just making things harder for myself than need be… and be lectured about how I’m being self-indulgent and pulling a martyr act.

How irritating. But at the same time, I did have some insights at the end of the session — that actually came from friends of mine from many years ago, who would give me a hard time for “sitting on the pity pot” or getting sucked down by justifiable righteous anger. I miss those friends from 20 years ago. I’ll have to look them up. They’re probably on Facebook…

Anyway, it often turns out that the times when my neuropsych is the most annoyingly “all-knowing” and comes across like a bit of a self-satisfied prig who’s got it ALL figured out, that I have these deeply contrarian insights that go directly against what they’re convinced is true — and doesn’t seem to be true (to me) at all. It’s when I have to most vigorously defend myself and my self-respect, that I find my way back to solid ground. Maybe they do it on purpose, because they know it helps me. OR maybe they really are just a self-satisfied prig who thinks they’ve got it all figured out.

All in all, it’s not entirely bad.

But geez, what a godawful pain in the ass they can be. And then I feel a little guilty for being so irked by them, because they’ve helped me so much.

Or maybe my being irked is a good sign — that I’m still my own person, and I’m in no danger of falling under their svengali-like spell, and I’ll always, without fail, make up my own damn’ mind about things.

I’ve got to say, sometimes my np really bugs the crap out of me, but they’re not there to be my therapist. They’re there to create the kind of environment where I can practice and refine the interpersonal and thinking/reasoning skills I need in the outside world in an environment where I won’t be subjected to constant ridicule and second-guessing. I’m there, quite frankly, to be safely pushed — and to see how far I can go. And in a way, I think sometimes I’m there to push them a little bit, too. Somehow, the arrangement seems to work.

So, onward it goes. I’ll be back to see them next week. And in the meantime, I’m going to look up those old friends of mine. They could always be as rude and obnoxious and about as human as a person can get. They were also a lot of fun. And I miss them.

Okay, fine – I’m up

This is going to be another one of those nights/days, I have a feeling. I woke up at 3:00 a.m. again, thinking — among other things — about work, and everything I need to get done. I just need to clear a bunch of things off my plate, and at the same time, there are all-day trainings that have been going on all day. So, I work late, and since there are so many moving pieces and there are so many different people involved, I end up basically sending out emails to people and then chasing them down, trying to get an answer.

I’m hopeful that I can get a bunch of things just finished in the next week or so. There is a LOT going on, and I need to clear away the old stuff to make room for the new. There’s a lot of new stuff coming down the pike, and I can’t start on them, till I get the old stuff finished.

At least I’m not the only one in this situation. The rest of my team are all waking up at 3:30 a.m., too. Just the other morning, we all gathered unexpectedly and reported how little sleep we’ve been getting.

Maybe it’s not just me… we were thinking maybe it was the full moon. Or maybe it’s the impending move. I think a lot of people may be leaving, come the end of the year. Tacking an extra half hour onto people’s commutes, doesn’t do much for loyalty. Plus, a lot of us picked this company because it was closer to our homes than many other jobs. I’m really not sure what I’m going to do, when it comes time to start doing this. Work remotely sometimes, I suppose. But you really need to be THERE to make good progress, so maybe I’ll find some good audiobooks and just entertain myself during the drive.

One good thing is that the training I’ve been in yesterday and today is really good for my resume. It’s in a skill I need to have, to stay competitive, and it really helps me get good perspective on my job and everything about it. It puts things in a larger context, which has been a huge challenge, considering all the “trees” I’m dealing with. Lots and lots of details, lots and lots of little hooks to get caught on. Working through the different steps of my work is like walking through a bramble patch — and it’s that way for all of us — we’re constantly getting snagged on some jagged point or thorn. The technical systems and the processes (or lack thereof) that are in place are very ad-hoc, catch-as-catch-can. There’s not much about the place that’s systematic – they like to run the place like a small business, which it is not – and it takes a huge toll on productivity and effectiveness.

Sure, we all get to be individuals with our own particular point of view, but geez, do ya think ya could do the same thing the same way twice? It’s a little maddening.

BUT, with some basic changes to how I do things, and with some extra project management help, I’m sure this can turn around.

I hope…

This job situation is pretty wild. And I’m starting to get that it’s not all me, that’s got the issues. I get a slightly different message each and every day — one day, I’m encouraged to take time off… no, TOLD to take time off… then less than a week later, my boss gives me crap because I worked from home for a few days. They tell me, “Take your time — don’t make yourself crazy over things,” then they ask me “Why isn’t it done yet?” My immediate boss is an operator who likes to play “puppet-master” with projects and schedules, and who feels the need to “manage situations” to their specifications. Forget about actually doing the work. They’d much rather be spinning things and taking credit for everyone else’s work. Oh, my.

If they keep this up, they’re going to lose everyone. Hey – maybe they’ll get promoted. That would be fitting. Let someone else at a different level take care of them.

Anyway, back to the joy… It’s been a while, since I felt real joy at doing the work I do. There are moments when I really do love what I do, but there is so much to do, and so little time to actually enjoy it, to really get into the work. It’s wild – it’s like we’re just being driven to do more than anyone can humanly accomplish, largely for the purpose of our bosses proving that they can do just that.

Well, I can’t worry about it. I’m going to just focus on getting done what I can get done, and move on to the next thing. I need to tally up my accomplishments and clean up my resume, just so I’m not caught out, if things get really bad with the commute and the workload, and I need to find another situation.

And I need to sleep. I’ve heard it said that being fully relaxed for 15 minutes is the equivalent of 30 minutes of sleep, so I’m going to try to relax for a little bit… and simulate sleep.

Tired and dizzy and running late

Well, this is great… not. Our big deadline is today – what we’ve been working towards for many months, now. I was awake early, thinking that I could get to the office early. I will get there a few hours before I usually do, but after getting some exercise and eating my breakfast, I find that the clock has moved more quickly than I thought it was. I’m running a little late.

Part of the issue is that I’m pretty dizzy. So, I’ve had to be more careful and cautious about how I move, this morning. I can’t rush around, I have to pay attention to where I put each foot, how I move each part of my body. And that takes  more time than usual. I have to be very deliberate, very mindful, as I move around. And as I slowly navigated my way down the stairs and into the kitchen this morning, I thought about the times years ago when I could just move… without thinking about it and coordinating every move.

Oh, well.

Did I have sugar yesterday? Dairy? This feels like dairy vertigo — when I have dairy, I get mucus-y and my ears fill up, and I become very dizzy. I don’t think I had any milk or milk products. I must just be tired. Very tired, in fact. Yep, that’s it. I could use about 8 hours of uninterrupted sleep, right now. Not gonna happen till much later today, but a person can dream…

I’ve been pushing hard for weeks, and I’m feeling it for sure. I worked most of the day at home, yesterday, starting around 4:30 a.m. getting things together and all organized. I worked till about 2, then lay down and rested for an hour, then got back up and took care of errands. It’s nuts, and I probably should have gotten more sleep than that hour nap in the afternoon, but again, this is the big deadline. The end of this project. And a bunch of us were online, sorting out last-minute things all day. I was not the only one.

These last minute things have been completely and totally needless, in my estimation. If I think too much about it, I rapidly become irate… even livid… that certain folks on the project dicked around while a number of us were voicing concerns about not having enough time to get everything done in a systematic fashion. But no, certain individuals were busy jacking around, fiddling with this and that and the other thing, rather than staying on point and being focused on what was important.

Like I said, if I think about it too much, it makes me nuts. So, I’m using my noggin and not wasting time getting all tweaked over stupid sh*t I can’t change at this point. We have time to change later. After the obnoxious SOBs who carried on like they knew what the hell they were doing, have paid the dear price and have let these lesson sink in.

That’s assuming, of course, that the lessons will sink in. From what I’ve seen, that might never happen.

Oh, what-ever. I can’t let this experience define me. I can’t let it shade my perception of myself and let it get me down. There are things I did wrong, that have contributed to the last-minute mess. Things I did wrong many months ago, and didn’t fix. Part of this is my own damned fault. And I accept that. I’ll take full responsibility for that. But my name isn’t Patsy, and I’m not taking the fall for this. Not gonna happen.

But all this internal haggling isn’t going to get me anywhere. I’ve got to keep my head above water and keep my spirit and soul intact. I’ve got to focus on the positives and carry myself in the best way possible. People are people, and I’ve been in this business long enough to know that this sort of crap happens all the time. There’s always something. And in response to what’s gone down, I have a multi-point plan that we can follow as a team and as a division, that will not only help prevent these sorts of things from happening, but also make us even better in the long run.

I read recently that sometimes people learn best from hard lessons. Trial and Error Learning (TEL) can work better for some than Errorless Learning (EL). My neuropsych tells me that for some people, EL is the only way they can really learn, and TEL is a recipe for disaster.

We’ll find out today — and in the coming weeks and months — how that’s going to shake out.

For now, I just need to get a move on. The day is waiting.

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