First, the basics

                             How it stacks up

Probably one of the hardest things for me to handle in this TBI recovery business, is taking care of the basics. Keeping things simple. Keeping things from getting way out of hand. Keeping myself on track in a way that makes sense for me in the short and long-term.

It’s not easy, to be sure. One of the problems with the basics, is that they are not very exciting. They don’t make for high drama (unless you completely forget all about them and you have to fight the fires that pop up when they go neglected for too long). They also don’t hold my attention as well as, say, a fire. THAT holds my attention, and it often gets me involved in my own life on a level previously unexperienced. That’s exciting. It’s also draining. While it may be engaging and invigorating for a while, it tends to drag my attention away from still other basics that I really need to pay attention to, so I don’t end up with more fires.

First, the basics. A good night’s sleep. Saying good morning and good evening to my loved ones. Paying attention while I’m making breakfast. Eating breakfast, in the first place. Getting regular exercise. Not letting little things get to me. Running my errands on time, not in a panic. Doing what’s in front of me to the best of my ability.

I think one of the things that gets in the way is just the sheer amount of time it takes me to do the basics. The old seamless, quick, simple ways of doing basic stuff is a thing of the past. No use fighting or worrying about it. I just need to do things differently than before. But it is time-consuming, and it can be tiring. And at the end of the day, I end up with far less accomplished, than if I’d been able to quickly dispatch the easy things and move quickly on to the next more exciting and more advanced thing.

It can be very discouraging to start out my day with a list of cool things I want to get done, then get sidetracked by fatigue or distraction, and end up with half the things still undone on my list. How frustrating. I mean, how hard can it be to do such-and-such? Apparently, it’s harder than I thought.

Either that, or I’m not nearly as capable as I imagine. Either option is a bit deflating. Why don’t I just go back to bed, then, if I’m never going to get anything meaningful done? Why not just pack it all in?

Well, because there are some things I really, really want to get done. I want to live my life. I want to live it to the fullest that’s humanly possible. I want to explore, I want to find out what’s out there. I want to stretch and test my limits and take it all in, like a meal that never ends. I want to live. Even if it means that I have to pick and choose between the things I really want to do, and the things that I’m likely to do. Even if it means turning my back on the things I think I want to do, but will very likely never, ever get done — either because there is just too much time involved in getting it all take care of, or because it’s some dream I had from when I was younger and different and didn’t have the perspective I have now.

The basics. Get back. In the end, it will be worth it.

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Toward rut-less-ness

A new trail...

I need a new gig.

Not a new job. Not a new life. But a new way of structuring my days — that incorporates a whole lot more flexibility into my schedule.

I guess I need a new kind of gig.

I took some time yesterday to step back from everything and really think things through. I worked from home and took a nap in the afternoon. Took my time at things. Didn’t focus so much on the little tasks, but thought about the larger picture… what I’m actually DOING with my life.

It’s not enough, anymore, to just take care of issues and meet requirements. I need something more. I need some meaning behind it all. When I was 25, it was enough to do what other people told me to do, and it was profoundly fulfilling to just do the things that I thought I couldn’t do.

Now, though, things are different – very different indeed. And why I do appreciate the need to deliver on promises and achieve goals, there needs to be something more to it, than just doing as I’m told.

I think a lot of people get to this point when they get to be around my age — mid-40’s — wondering “what’s it all about?” I won’t say it’s a “mid-life crisis”, because it’s not a crisis. It’s more of a check-in along the way. I also won’t say “mid-life” also because I plan to live past 90. I’ve got relatives who are in the 100-year range, and they grew up without a lot of the medical and health resources I have. I believe it’s entirely possible to life well past 90, in my case. So that’s what I’m planning for.

That means I’ve got a ways to go. And I need to pace myself. I need to not drive headlong into the future just for the sake of driving. I need to live my life fully — mindfully. I’ve tried it other ways, and I got hurt a lot, when I did it that way.

I don’t want to get hurt, anymore. It’s time-consuming, soul-consuming, and very, very expensive. Hard to bounce back from. Been there, done that. Still kind of there, in fact. Don’t much care for it.

So, back to this “rut business”. I’ve noticed that I’m getting more and more tired, as time goes on. I’ve changed up my sleep schedule, because I just don’t do well with going to bed early. But I don’t really sleep in, either. I’m getting maybe 6 hours of sleep a night. 7 if I’m lucky. At the start, it wasn’t a big deal, but it’s catching up with me.

I really need to start taking naps around mid-day, and stop pushing myself through. Or at the very least, step away and do progressive relaxation for 15-20 minutes. I feel SO much better, when I am at least slightly rested. I’ve also noticed that being tired takes all the joy out of what I’m doing.

Sure, I may be feeling high and pumped from the extra adrenaline, but it’s taking a toll on both my body and my spirit. I want to enJOY what I’m doing with myself each day. And I can’t do that, when I’m overtired and struggling just to keep awake. When I’m rested, everything just flows… and I don’t need as much structure, as much of a rut, to keep me going. I just keep going, because it feels great, and I’m really into what I’m doing. When I’m rested, when I’m alert, I’m so much better able to participate and contribute. Because I’m all there — and I don’t have to funnel my energy into the most basic activities. Rest takes care of those for me, so I can focus my attention on the higher things. The really, really important things — like what all I’m doing with my life.

And why.

I really do need to be disciplined about this nap business. Really make the effort. Do this nap thing on-purpose, regularly, for six weeks — that’s how long it takes to develop a habit — and see what it gets me. I suspect it’s going to really help. I’ll have to report in regularly about this… now I’m curious.

Well, speaking of discipline, it’s time for me to get ready for work. I’ve had my exercise and my breakfast, and I’ve written a little bit to keep myself on track. Next up — the rest of my day, wherein I work with others towards common goals and greater prosperity for us all.

ONward.

TBI Benefit #27 – An increased refund from the IRS

I got a surprising letter today – actually it came yesterday, but I was napping and resting most of the day, so someone in my household brought the mail in, opened it up, and left it for me on the kitchen counter. Lo and behold, the refund I’d calculated for my 2007 taxes (I filed for an extension and did an estimate, which was conservative — I took all the deductions I could legally take, according to TurboTax, and along the way, when I found some other deductions I was pretty sure I could take, but wasn’t 100% certain, I just didn’t include them. Now the IRS is telling me that they owe me a bigger refund — probably by a couple hundred dollars, since I don’t have my tax returns in front of me.

You don’t hear that every day!

My strategy of claiming less deductions than I suspected I was owed paid off… for now. I actually found some other earnings that I’d completely missed when I filed my estimated taxes, so my refund may actually be lower, but the habit of being more conservative and less hasty worked out for me. Playing it safe, with the understanding that I could be completely wrong in my math, soothes me and gives me something to fall back on. In any case, my thinking about things tends to get fuzzy and I tend to lose my train of thought, so I don’t dwell too intensely on tax anxiety.

I guess my attitude towards taxes is very different from most folks’ — I believe in paying them and paying my fair share. Yes, there are a lot of places my tax monies go that I don’t agree with, but all in all, the tax burden here is far less than in many European countries, PLUS I get a whole lot more freedom here, than anywhere else, so I figure it all evens out. I pay my way. TBI or no, I pay my way.

I like my roads paved and plowed. I like having elected officials. I like the fact that children of poor people have access to milk and cheese and other WIC resources. I’m not one to judge others for “gaming the system” — too many people do it in too many ways for me to get started on that, and it just confuses me. Our governmental system, say what you will, makes it possible for us to live in an amazing country that people are literally dying to get into.

Yes, I pay my taxes.

Paying taxes for me, is actually an important symbolic thing. Sure, I slip up sometimes and have to file for extensions. And sometimes I’ve messed up and even missed the extension deadline. But I do pay up, because being able to participate and contribute to this country is not something I take for granted. I’m a very different person from most folks, and my abilities are varied and my disabilities are often hidden, so the times when I can participate as a “normal” person… pitch in and help out… do my fair share… help make a difference, in however small a way… well, I take that opportunity.

I think a lot of “neurotypical” people take things for granted that mean so much to so many of us who are on the margins — by chance, trick of fate, or horrible accident. I think people tend to take for granted the ability to go out and get a job, the ability to participate in casual conversations, the ability to meet other people and be active in their communities. I think that a lot of regular people just assume that things are done a certain way — you get up in the morning, shower, dress, go off to work, put in your hours, then come home, pay some bills, watch some television, and go to bed… and do it all again, the next day. On the weekends, there are sports games and activities… movies and get-togethers… travel and leisure pastimes that many, many other people are doing… take the boat out on the lake… go skiing or surfing or skateboarding or sailing or hiking or play a ballgame of some kind.

But for someone like me with a history of tbi’s, none of those things are foregone conclusions, and they rarely go as smoothly as regular think they do (or should).

Getting up in the morning can be a challenge, as I’m rarely fully rested, and I tend to wake up either too early (most of the time), or too late. Showering can be a complicated thing, as I often can’t keep track if I’ve soaped up and rinsed off, shampooed my hair, or how long I’ve been under the water. And my lightheadedness and vertigo can make just standing in the shower a really nerve-wracking exercise.

Dressing for work can set me off, because I tend to forget what I’ve worn earlier in the week, and unless I have my clothing all lined up in chronological order, I can easily end up wearing the same thing twice in two days. Plus, if I’m really out of it, with vertigo or sensory issues, I can walk around for most of the morning with my shirt buttoned all wrong or my fly open. (I once went through a whole animated job interview, standing at a whiteboard, sketching out possible solutions to problems posed to me… with my fly open… which is NOT the kind of impression I wanted to make! I still got the job, but jeez, how embarrassing!)

Going to work has its own share of hazards, as bright sunlight is hard for me to handle, and even with sunglasses on, the shifting contrasts of light and shadows play tricks on my eyes. And when I’m tired, there’s always the hazard of road rage… or misjudging a situation. One morning, not long ago, when I was tired and angry while driving to work, I almost ran in to someone who wasn’t obeying the right-of-way rules — just because I refused (on principle) to budge. They were driving right into my path, but I had the right of way, so I motored on like a bull-headed idiot, and I almost got hit — just because “I was in the right” and they weren’t following the rules. On principle, I was correct and I had every right to drive through. But principle won’t pay for car repairs, and I only have one car I can reliably drive to work, so “standing my ground” was a really dumb thing to do. Plus, thinking back, if they had hit me, considering the place that I was in, that morning, I probably would have gotten in a fist fight with them, and I might very well have been arrested.  I was in a really bad place, and I consider myself (and the other person) to have been literally spared by divine grace. If it were up to me, I would have landed in really hot water!

At work, depending on my state of mind and body, I can either have good days or bad days. But it often takes a lot of effort for me to function at a “normal” level. Nobody I work with knows I’ve had TBI’s, and I’m not about to tell them. I hold my own and I do my piece, but it’s a real chore sometimes, just to get going. I have massive issues with initiating, with concentrating, with following through. I have huge interpersonal issues that I do a pretty good job of keeping quiet about — things like rage and hostility and anger and mood swings. On the surface, I try to stay impassive, but under the surface, it’s often a seething swirl of confusion and mixed emotions that are as high as they are varied.

Heading home in the evening, after a long day, I just try to listen to the radio and keep chilled out. I have to work harder at paying attention to traffic when I’m headed home, so that keeps my mind off interpersonal aggressions and whatnot.

At home in the evenings, I’m just so wiped out, so often, I can’t even look at anything that needs to be handled. I’m so exhausted… it’s all I can do, to eat supper and flop down in front of a movie. Now and then, I’ll manage to do things I’m supposed to do, but they often get pushed off till the weekends.

I have to say, in th past, I tended to just push through and not give myself a break and just ignore the fact that I was exhausted all the time. I didn’t pay any attention to myself, and I didn’t take care of myself. I didn’t like the fact that I was tired all the time, so I refused to admit it, and I just pushed through with doing whatever I felt needed to be done.

That was fine for my productivity, but the net result was that I was an impossible person to live with. I was unresponsive, most of the time, moody and volatile to the people closest to me, non-communicative and prone to temper outbursts and meltdowns, and the kind of person whose intense volatility made everyone around me walk on eggshells all day. Yes, I appeared to be productive. Yes, I was getting things done. But I was just a machine — a shell of a person whose only solace was that I was making good money and keeping up appearances. Inside, though, I was wracked with pain and sorrow and exhaustion and hurt and anger and rage and confusion.

Now, I think know I’m much better off. I’m less “productive,” and it takes me forever to get things done or process ideas and conversation, but I’m now communicating with the people who live with me far more than I did in decades… I’m now sleeping more and taking care of myself better than I ever did… and I’m actually aware of what’s going on around me, which is more than I can say for the person I was, just three years ago.

Weekends… well, I won’t even go into them. Mine are very low-key, for the most part, and I do so poorly with crowds and frenetic activity, most popular activities (like the ones I mentioned above) do NOT appeal to me. I spend most of my time gearing up to do basic things – like take the trash to the dump or go food shopping or go to the library or clean something. I spend a lot of time spacing out and not doing much of anything. And by the time Sunday night comes around, I often feel pretty deficient about not having gotten much done.

Daily life for someone with a TBI is often far from simple, and it’s often anything but straightforward. Sometimes it takes a monumental effort, to just approximate “normal.” I accept that as part of my life… just something I need to deal with… and I try not to dwell on it too much, lest it demoralize me and hold me back.

Given all the “normal” things that tend to be so complicated and difficult for me, if there’s something relatively simple and straightforward I can do to participate and contribute to the common good — like pay taxes — I’ll gladly do it.

It’s a small price to pay to be part of something as amazing as the United States of America.