Taking a week away

I’ll be traveling for the next week, so I probably won’t be posting very much until weekend after next. I might not post at all, actually. I probably won’t have access to a personal internet connection — it’s going to be all work, all the time — and that will be good for my work, but not so great for my own personal life.

No biggie, though. I have a feeling the week is going to fly by. It will give me time to focus outside of my usual realm, change pace, change gears, and hopefully come back with a fresh perspective.

I can really use a fresh perspective. Things at work are intermittently weird and annoying and encouraging. The encouraging things don’t stay that way for long, because people get
“triggered” by one thing or another and start acting really strange. People are jockeying for position with the organizational changes taking place, and they seem to think that pushing others out of the way is the way to go.

However… I would say that their chances of survival will be much better if they make an effort to bring people in, to collaborate and cooperate and make room for others. You can’t argue with someone who’s on your side, who is helping you get where you’re going.

As the late Zig Ziglar said, “You will get all you want in life if you help enough other people get what they want.”

So, helping others and bringing them in, is a great way to ensure you’ve got a place in the world. And it’s also a lot more enjoyable than being in a constant state of conflict and contention with everyone around you. Some people love the fight, of course, but eventually the human system breaks down. It’s not something you can stop happening – it will happen, it’s just a matter of when.

I, for one, have opted out of that approach. I used to be so wrapped up in it, and I was not only constantly wired, but also running on fumes — just exhausted and wiped out and nervous and anxious and making “the fight” the centerpiece of my life. Then I learned to relax, a few years ago, and I got back to just sitting and breathing… like I used to do before my fall in 2004. That sitting and breathing, along with knowing how to relax (and knowing what that feels like), has made an enormous difference; where I used to be wrapped up in staying stressed and staying “on” all the time, now I’ve actually experienced how helpful it is to be relaxed.

I’ve also realized just how hard it can be to stay relaxed in the course of my everyday life. It takes continual attention to how I’m doing, personally, to manage what’s there and keep ahead of it. I need to track things like distractions and fatigue level and anxiety… and keep work with them to bring them into a manageable range. Using my tools like active relaxation and breathing and being mindful… as well as stepping away when I need to, and getting enough exercise and the right kinds of food and rest… it’s all part of it.

And those are the tools I’m going to be using while I’m traveling. I’m going to be away from my usual routine, so I really need to keep steady with my tools, use them and make the most of them, so I can be productive and actually have a good time, while I’m traveling. I need to not get distracted by all sorts of things that may or may not matter — just stay on track and keep focused on what I need to do, versus what I’d like to do in the passing moment. There will be plenty of opportunities for me to “wander off” and lose focus, so I need to keep steady to make sure that does not happen.

So, speaking of keeping focused, I need to get on with my day. I have a lot of preparing to do, before I take off tomorrow, and then I have a full week ahead of me next week. I’m really looking forward to this trip – it’s a big one, probably the biggest in a long time. And I want to do it all justice. I’ve been working with my list of to-do items, scheduling and timing things out and making sure I’m taking care of everything in a systematic manner. If I don’t organize myself, I’m sunk. So, I’ve been very, very organized and going about things in a systematic way. It’s paid off, in that my stress level has been surprisingly low and I’ve had my act together, like I haven’t had in a long time.

I’ve been a little concerned with missing some big thing at the last minute, then having to scramble, but I’ve worked through this in my head over and over, so I think I’m good. And if I need to scramble, I will. But I don’t think it’s going to be nearly as bad as it could be, so I’m feeling pretty good about things.

And with that, it’s time for me to sign off.

Have a good week. And enjoy.


Healing from TBI: Find what you love… and go after it

So, I’m taking a break from the “issues” to celebrate for a few minutes. I have found a kind of work that really, really moves me – and it’s complicated, so not everyone can do it (and drive the market rates down).

I’ve been narrowing my focus on what I’m learning for my next job change, trying to steer into more specialized territory where the rates are higher and I have to deal with less distraction and chaos, each day. And I believe I’ve found it — plus, it’s something I absolutely love.

Amazing, absolutely amazing. The great thing about this is that while the details of the work are quite daunting for me — there are a lot of new terms and new concepts that I have never encountered before — the final product of these things is so compelling for me, that I just don’t care if I don’t know it all right now.

And I feel a lot like I did, when I first got into building technology – like the whole world is out there waiting for me. I don’t care how complex this new line of study is. I don’t care how many new terms I have to learn. I don’t care if I get stuck on a piece of info for days, even weeks and months at a time — I love it. It brings me life. It brings me back to life. And I feel like I’m really “rebooting” and finally getting a handle on where I’m going and what I want to do.

Slowly but surely, I am getting there. I started out wanting to make a change, and I started looking around for what is in demand in the job market. I made lists of skills I need to have, to earn the amount I need to just live my life and not have to worry about being so close to the edge. Then I started researching those things, and I realized I was casting too wide a net – there was no way I could possibly learn everything I needed to learn to be really top-notch.

So, I started weeding things out and deciding what I would NOT study. And I just kept looking for what caught my attention and held it, like nothing else.

Now I’ve found it… and I’m really, really pleased. It’s such a relief. And it’s tremendous fun. As it should be.

I have every confidence that I can learn this material and do an excellent job of mastering it and applying it. I just love it, I can spend all day at it, I feel totally consumed and absorbed in it. And that will only help me, as I prepare for the next phase… of everything.


TBI Issue #6 – Trouble finding words

Which words should I use?                                      Where can I find them?

This issue has been coming up with me a lot, lately – I have been having trouble finding words, and I’ve been struggling a bit with it. I try not to let it get to me, but sometimes it really bothers me. It doesn’t help, when I am trying to get my point across, when I can’t find the words, and everybody is sitting there looking at me, waiting for me to get the words out.

There are two different types of troubles:

  1. My brain going too fast for my mouth, and my thoughts being too disorganized and too complicated for my words to keep up.
  2. Just not being able to find the words for what I want to say.

Either one is an issue. And both of them make me crazy.

It’s like being trapped in a closed room behind a glass wall, trying to get out, and not being able to find the door to get around the glass wall.

My solution is basically to keep going. To try to relax and have a sense of humor about it. But that’s very, very hard, when I’m at work, or the stakes are high.

The worst is when I’m in conversation at work over something that matters, and I’m sitting in a group of people who are moving along at a pretty brisk clip and expect me to keep-up-keep-up-keep-up. Part of the problem, is that a lot of people I work with move too damn’ fast as it is, and they need to slow down and really think things through, instead of rushing ahead to “produce results”. The whole “results” thing is absolutely maddening, because half the time it’s crap, and the other half of the time, it’s only partly baked, and it ends up breaking, on down the line.

But what do they care? At least they got something done, right?

Anyway, the point is that it’s not always my doing, that I’m not keeping up. Sometimes the expectations are just stupid, and the rush is completely unnecessary, aside from producing — a rush.

And that has nothing to do with TBI. But when these circumstances are in play, it exacerbates my issues, which IS related to TBI. Under those conditions, I really have to focus on keeping calm and steady and level-headed. It is so easy for me to get turned around and confused by all the commotion and the high energy… and it is easy for me to get distracted from what’s really going on — and then I start to joke around and distract other people, so my brain has a chance to catch up.

This is something I’ve noticed myself doing a lot, lately — fooling around and making jokes in the middle of intense conversations at work, so I can catch up. I need those extra few seconds to feel like I’m keeping pace with everyone else, and it’s annoying the people around me. Funny – I hadn’t realized until now that that is what I was doing… buying time, so I can catch up and get my head on straight.

Okay, so now that I know this is happening, I can do something about it. Fortunately, I will not have a lot of contact with the problem uber-boss for the next few weeks. I’m traveling out of the office all next week, and they will be out the whole next week. So, Christmas is coming early. I hate to say it, but I just can’t stand working with this individual. Everything is a battle for them, and that gets old after a while.

Anyway, back to trouble finding words… I just need to stay steady and keep my head on straight… not get flustered, and not get up in my head about what is wrong with me. And I also need to put more effort into keeping up — and making sure I’m not being disruptive for the sake of buying time.

It’s all a learning process, of course. And I need to be easy with myself when things get really tight and tough. I also need to keep in mind that the things that are really difficult for me now are a combination of environmental stress and my own issues — it’s not all TBI, and it’s not all everyone else’s stuff. It’s a combination. And by managing both external conditions (by putting myself in more hospitable surroundings) and also modifying my own reactions to what’s going on, I can get a handle on things, so I don’t have to struggle so much.

It’s no fun, not being able to find words. But it’s not the end of the world.


TBI Issue #5 – Trouble understanding

What’s going on out there? What’s going on in here?

So, I had a pretty good Thanksgiving. It was good to be with everyone, but I also burned through my money on gas and incidentals. It was cheaper than flying, but it’s still expensive to drive all that way.

Anyway, now I’m back and I get to resume my regular routine. I can get back to my daily work and start eating the foods I prefer to eat, at the times I prefer to eat them. I can get back to my usual “grind” which isn’t a grind at all – it’s quite pleasant, actually. I have refined it and honed it, to where I am pretty productive everyday, but at the same time, I also have room to move and breathe and make plans and preparations for what’s next in my life.

I have been thinking a lot, lately, about the issues I have understanding others. I have especially been thinking about the time, back around 1988, when I was in a car accident, got hit on the driver’s side of the car, and all of a sudden, I couldn’t understand what people were saying to me. It was especially difficult with people who had non-American accents – when they were talking to me, it sounded like they kept “clipping out” — like an old movie that has a choppy frame rate. In and out, in and out, getting only small pieces of what they were saying.

It was a big problem especially because they were my boss, and I could not understand what they were saying at all. So, I quit. It was a temp job, anyway, but to quit work… that’s something that was very unlike me.

That’s one kind of trouble understanding – just not being able to hear.

The other kind of trouble understanding (as I think about it) is needing enough time to catch up with what someone is saying to you. That’s what I’ve got going on now.

I often have to ask people to repeat what they said, because I need a minute to switch gears and catch up with them. I’m not stupid. My brain just processes information a bit differently, and that takes a little more time. I’ve tried to speed things up, but it doesn’t always work. It’s especially bad, if I’m in an “open environment” at work, where there are so many, many distractions. That is truly maddening with all the visual and auditory stimuli crowding me, and it makes it really hard for me to understand what people say to me right away. I usually have to ask people to repeat themselves.

I used to never do this. And it was a huge problem for me. In fact, not being able to hear — and never asking others to repeat what they said — had me blocked into a dark corner, where I was pretty much guessing all the time at what people were saying to me and what we were talking about. I have to admit, I’ve gone back to a bit of that — faking my way through. But this time, I’m aware of how spotty my working memory is, and I’m aware of what a hard time I have understanding people the first time they say something to me, so I really work at making up for the lapses. I take steps to actually “get” what others are saying to me.

There are several factors that come into play with me:

  1. Not being able to make out sounds, the first time I hear them.  I actually can’t hear the sounds if I’m not listening closely — it sounds like a garbled jumble of noise, and I have to really attend closely to get what others are saying.
  2. Being subject to tremendous distraction in the environment I’m in. Especially at work, where everything is open and countless sights and sounds are competing for attention. Having visual distractions actually makes hearing harder, because it distracts me from what I’m listening to. It’s really hellish, and as much as I’d like to make the best of my current situation, there is no way. No way in hell. In the spring, I have got to go, if they don’t reconfigure the environment.
  3. Slower processing speed, thanks to multiple concussions/TBIs. It’s bad enough when you can’t make out sounds, and when you have to deal with heightened distractability. But when your processing speed is slower than you’d like… triple-whammy. Everything slows down – it’s just crazy. And it’s exhausting, because I have to work so hard at processing everything. I sometimes feel like people avoid dealing with me, too, because I have to slow them down and our conversations can be so plodding. What fun is that? Not much for them, and certainly not for me.

Small wonder I’ve gone back to faking my way through a lot of conversations. It’s just so laborious at times, and I feel like such an idiot, not being able to “get” things right away. I can fake it through many situations, but eventually people tend to figure out that I’m fudging my way through, and then things start to come down around me.

Small wonder, I do so well with computers and prefer them and their company to real-live people who have no knowledge or compassion about my situation. A computer won’t yell at me and force me to “keep up”. It just says “yes” or “no” and always gives me another chance.

Others try to reassure me that I’m doing fine, that I am not impaired but they cannot see or feel how slow it is for me, and how hard I have to work at things. I try to explain to my neuropsych, but they cannot imagine what it’s like because we always meet under ideal conditions — in a quiet office without any distractions or pressure, and no terrible consequences for screwing up. I would venture to say that I am a very different person in my NP appointments, than I am in the outside world. I just wish I could communicate that to them.

Well, anyway, my work day is about to begin. I am working from home this morning — have a few conference calls I need to make, which requires a lot of listening and understanding. The thing that works in my favor is that I’m talking to folks outside the USA, and we ALL have trouble being understood. In a way, my difficulties make me easier to work with, in that respect, and I can offer my colleagues a lot of leeway they don’t get with my other American colleagues, because most people don’t understand what it’s like to have trouble understanding what others are saying to you.

But I understand. Very well, in fact.

So, now it’s time to go and put that knowledge to use.

This is a great writeup on “getting stuck” – it explains a lot. See anybody you know? I can think of some folks, including myself.

ADD . . . and-so-much-more

Stubborn? or Stuck!!

by Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC

A bit of Review to Catch You Up

As I said in the previous article entitled ODD & Oppositional Rising: Most of us know somebody who seems to have an argument for just about everything — somebody who almost always has to “go through NO to get to yes.”

I likened those individuals to old television sets with stuck channel changers (way back before the days of remote controls).

Almost ALL of us, I addedADD or not, have a small  — perfectly “normal” — part of our personalities that balks unless a task or idea is totally appealing in the moment we are “supposed” to take it on.

We don’t WANT to change the channel — we want things to keep on being the way we thought they were going to be – NOW!


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Keeping the home fires burning bright

Keep the home fires burning bright.

We got back late last night from my Thanksgiving trip to my parents’ place. All the (living) siblings descended from points throughout the USA, with all the kids (plus a few friends) in tow, and we proceeded to completely overwhelm each other. It was all in good fun, of course, which is a big change from how things have been in the past, and for that I am very, very grateful. I’m even more thankful now than I was on Thanksgiving day. It was a good visit, this year. Much better than in the past. Many a year has come and gone with me (literally) writhing in emotional and physical agony over the holidays.

The Top Ten things that set me over the edge in the past were:

  1. Not taking good care of myself, eating all the wrong things in very large amounts.
  2. Not pacing myself with all the activity.
  3. Getting bent out of shape over things that people said or did.
  4. Not getting enough exercise.
  5. Not getting enough alone-time”, but staying in the thick of everything ALL the time.
  6. Deciding to “take the bait” when siblings wanted to argue and tangle with me, because somehow I thought that this time I would “win.
  7. Trying to intercede to make sure that the arguments between my spouse and my parents didn’t escalate.
  8. Trying to make sure my spouse was always comfortable and felt welcome (a losing battle, if ever there was one).
  9. Getting upset over people saying and doing things I did not agree with — AT ALL — and trying to debate issues, getting turned around, and melting down, either privately or publicly.
  10. Pushing myself to do things when I was over-tired or over-stressed.

None of those things happened this time — that is to say, I chose to do things differently, so that none of the above had to happen. There were a couple of close calls, but I just noted them and moved on.

The Top Ten things I did that kept me well back from the edge this year were:

  1. Making an effort to take good care of myself, eating the right things in the right amounts. I brought my own cereal and rice milk, so I could be dairy-free, and I steered clear of a lot of bread.
  2. I paced myself with all the activity, being active at times, and stepping away from the pandemonium at others.
  3. I didn’t bother getting bent out of shape over things that people said or did. I figured, there was a really good reason they think what they do, and I haven’t the faintest idea what those reasons are, so leave it well enough alone.
  4. I started out each day with exercise. Either I walked up the big hill from the place where we were staying to my parents’ house — about 3/4 mile all uphill — or I walked my sibling’s dog when I got to the house. I took the dog for a lot of walks – it was very cool.
  5. I did my best to get enough alone-time. Granted, with 9 kids and a dog running around at top speed the whole time, and all the nieces and nephews wanting me to play with them or hang out with them, it was a challenge — because I really wanted to be in the thick of everything. But I did step away at times. Everybody did, actually.
  6. I didn’t “take the bait” when siblings wanted to argue and tangle with me. When my smart-ass, condescending siblings would start in on me, I would just nod and smile and make some vague comment that told them I wasn’t “going there” with them. There was just no point. I think they were glad of it, too.
  7. I did not intercede to make sure that the arguments between my spouse and my parents didn’t escalate. They have major differences that rankle my spouse to no end, but after 22 years, I’ve finally realized that that’s “their thing” — they actually enjoy wrangling with each other, sparring and testing each others’ boundaries. It’s taken me two decades to get used to it, but finally I’m fine with things never being fine between them.
  8. I literally quit trying to make sure my spouse was always comfortable and felt welcome. Through no fault of anyone, that’s a losing battle. My family can be very judgmental and alienating, so no matter who is with them, there will always be an element of “You don’t belong”. That applies to me, as well, but it’s very difficult for my spouse to take. They really feel that judgment sharply, and they take it personally. And they get combative when they’re not comfortable or feel like they’re being attacked  — which they do, around my parents, because, well, they are being attacked. So, I’ve spent way too much time over the years, trying to find common ground and let them work it out with each other. This time, I just washed my hands of it and let it all alone, figuring that they were all adults and could reach some agreement, somehow, without my meddling. One other “bad” thing that turned out to be helpful, was that my spouse was sick with an upper respiratory infection, so they were laid low for much of the time, anyway. I did what I could to make them comfortable, but they just weren’t, so I let them “do their thing” with sleeping a lot and stepping away to take meds and such, and I just got on with my own visit. I feel bad that my spouse was not feeling well, but they’ll have their time with their family at Christmas, so then they’ll get to be involved and feel accepted and welcomed and not judged. It’s a balance, this time of year, and there’s always going to be “emotional collateral damage” so let’s let it go it at that and be happy for what good we do have.
  9. I didn’t bother getting upset over people saying and doing things I did not agree with — AT ALL — and trying to debate issues, getting turned around, and melting down, either privately or publicly. I’ve tried the debate thing for I don’t know how many years, and it’s always been a losing battle. I just lose my train of thought in the midst of heated debates, and then I get bent out of shape because I can’t think clearly and all my TBI-related issues come flooding to the surface. And I get sucked down into that “I am so eff’ed up – what is wrong with me?!” Which is never good for anyone, because then I take it out on my spouse or anyone else who is nearby, including myself. In the past, I’ve actually hurt myself over it during meltdowns, slamming my head against a wall or hitting my arms or legs so hard that they bruised. It was the only way I could find to get my brain to stop cycling down into the pit of despair. Giving up on the negative self-talk from the get-go works a whole lot better, I’m happy to report.
  10. I quit pushing myself to do things when I was over-tired or over-stressed. This was the only thing to do, in the face of all that activity. Yes, I missed valuable time with elderly relatives I may never see again. Yes, I missed out on conversations and activities with nieces and nephews. Yes, I missed out on things I would probably regret if I knew exactly what was happening. But my internal barometer has gotten so much better over the past couple of years, and now I can tell when my stress level is pushing me, and I need to stop the pushing. This is so important, because when I’m over-extended and stressed, I say and do things that I deeply regret (like saying obnoxious things… starting arguments over nothing… babbling when I should be quiet… falling down and sustaining injuries – including brain injuries… and pointing a real-but-not-loaded rifle at my youngest sibling after a long family trip and pretending to shoot them).  Bad things tend to happen when I am overextended and keep pushing. So, I stepped away and stopped doing things, even the things I wanted to do so badly, because it wasn’t worth the risk to myself and others. Better to have fewer moments with an elderly relative that I want to remember than having a lot of moments with them that I want to — but cannot — forget.

Bottom line about this past Thanksgiving: Gor the sake of myself and others, I just let a lot of sh*t go — I have a number of very elderly relatives and friends, who may not be alive the next time I visit, so I just wanted to focus on the good — and feed that side of my attitude.

I also didn’t beat myself up, if I couldn’t do certain things, like stay up talking when I was exhausted, or go do things when I needed to do something else. I just went with what happened, and tried to find the good in it.

Which was an early Christmas Miracle — some of my relatives can be politically and socially obnoxious, and they are convinced they are 100% right and everyone who doesn’t agree with them is an idiot. Also, half of my family is very connected through in-laws and marriages and churches and shared connections in their communities, so there was a lot of talk about things and events and people and ideas that I wasn’t a part of. I did feel very isolated at times, and I felt sad that I wasn’t part of that world, which is very close-knit and supportive for those who belong. But there is a price for everything, and I have never been willing to give up my independence and personal convictions, to go along with the group, So even though I don’t have those community connections and widespread support, and I was very much on the outside many times, at least I have myself. And that’s what truly matters.

It was really hard being around people who believe that their world is the only right one — and everyone else is wrong and stupid and ignorant and corrupt. Because that puts me on the outside, and when everyone is all together, that feeling of being marginalized is even more pronounced. But then I thought about all the other people in the world who feel that way, for one reason or another — and I didn’t feel so badly. Because even in the midst of a supportive community of common values, there are many who feel secretly alone and isolated.

It’s not just (about) me. We all feel that way at times. It’s just how things are for lots of folks.

So, by putting my emphasis on the experiences of others, I was able to get away from my own self-pity — and I was also able to see how even the folks who were the “ïn crowd” were still very much on the outside.And I was able to really have some good conversations with family members who have been pretty estranged for many years. So, all in all, it was a good visit – mostly because I got the hell out of my own way.

This holiday season, I feel more motivated than ever to really do justice to this blog — not focusing so much on ME and MY problems, but talking about the issues that so many of us have in common, and sharing solutions that have worked for me, so that hopefully others can benefit as well.

This is a season of giving, no matter what your religion (or no religion at all). Yes, it’s over-commercialized. Yes, people are behaving really badly. Yes, it has lost a lot of deeper meaning in the mainstream culture. But each of us, in our own small way, can supply our own meaning and do what we can to honor and support that within ourselves. Whether you are celebrating the birth of Jesus, or a Season of Lights, or Principles that guide you in life, or the turning of the Wheel of Life, each of us can make of this season what we will. We can choose to wring our hands and shake our heads over videos of Walmart cell phone brawls, or we can look for ways we can reach out to others and give what we can from what we have. We have a whole range of things we can look at and wonder about, and each day we see a broad spectrum of behaviors we do or do not approve of. It’s our choice, how we relate to those things, and it’s our choice how we respond.

I, for one, would rather be part of a solution and bring hope in a time when so many feel hopeless and alone. This blog is one small way I can do that, and I hope to do some good, this holiday season — and beyond that, each and every day.

In many parts of the world, it’s getting cold. That doesn’t have to happen in our hearts.

Homeward bound

This Thanksgiving has been a good one. It’s been a whirlwind tour, and it’s been completely exhausting, but I have held up remarkably well, I’ve taken good care of myself, and I haven’t had any terrible breakdowns, as in years past.

So, for that I am very thankful.

I got to see family members who live far from me. Got to reconnect, had some good times playing games and visiting. There’s a lot about this that makes me sad and angry and upset, but when I am rested, I can handle it.

So, I’m handling it.

I’ve been taking regular naps — yesterday I didn’t get one, but that’s okay. I’ve also been pacing myself and making sure I step away on a regular basis. I don’t feel the need to force myself into the fray constantly. And the old pressure to pack as much visiting in as humanly possible, has given way to common sense and a better pace.

I’m pretty well exhausted from it all, but I’m doing my breathing exercises, and I’m getting regular brisk morning walks up a very large hill, which is helping a great deal.

I’m headed home this afternoon, and I’m looking forward to having my life back – in my own home, with my own food, my own bed, my own schedule, in my own way.

It’s been good here. And it’s enough.

Little Victory, Fall 2012 – I can taste my food

It turns out, I love food

Oddly, I am able to taste my food and really enjoy it, like I’ve not done in recent memory – maybe ever.

I’ve never been much of a connoisseur — food is food, and what matters most to me is that it’s healthy and real. Maybe I never got into the food enjoyment business, because my sense of taste has been so crappy.

I’m not sure how this happened, or why. I think it is related to my being able to relax – something I have been practicing actively for a number of months, now.

I am relaxing, and I can taste my food. It usually doesn’t taste like much to me, no matter how delicious it is. But this past summer, and even more this fall, I have been able to taste more and more of it — and actually enjoy eating.

It’s amazing. I don’t even know how to describe the feeling. It’s like getting one of my senses back – that I never even knew I had lost.

It’s not a permanent state, and I’ll go for days without really tasting anything. But it actually happens, now and then, and it’s pretty amazing when it does.

What I’ve left behind

Somewhere, someone cares about your loss

I’ve been thinking a lot, lately, about the things I’ve left behind over the years. The people, the places, the things… as well as the abilities and interests that have gone away, due in large part to TBI. With Thanks-giving fast approaching, here in the U.S., and travels to old haunts and family activities on the horizon, I have been thinking a lot about how things are different now than they were before — as well as how things might have been different, had I not fallen in 2004 and gotten screwed up with that head injury.

I’ve also been thinking a lot about how I handle my life now, compared with before, due to my TBI recovery work, and my discussions with my neuropsych. The professional I see for rehab work is not very big on acknowledging or dealing with the losses I’ve experienced — in part because my perception of those things has been pretty heavily skewed, and it isn’t always accurate. And my NP is there to get me to move forward, not stay stuck in the past.

In any case, they don’t seem to believe me when I tell them about how things were before my injury. Like so many people, they make up their minds about who and how I am, and they use that as a reference point for dealing with me. Their reference point isn’t always accurate — but then, my own reference points are not always accurate, either. So, between all these different reference points, without having any confidence in specific details about Who I Really Am and How I Used To Be, I just keep moving forward, keep living my life, and I don’t try not to worry about.

But aside from the general haziness of who I really am and how I really am, I have been dealing with a lot of sense of loss, lately. I have immediate family members who have either passed on, or are in their late-late golden years and may not be around much longer. I also have family members who make what I consider really un-healthy decisions and are locked in a constant struggle with drama they have invented with their own personal choices. All in all, it’s pretty depressing to go visit my family, because there is so much unhappiness — due in large part to people making decisions that are not healthy or helpful for them and those around them. The worst part is, they can’t seem to see any way out of their decisions, as though they “have” to do those things that hurt them.

Am I being vague? Here are some examples of choices by loved-ones that depress me:

  • Moving in with someone and then marrying them, despite the fact that they have a drinking problem… then being stuck in a marriage that looks great on the outside to everyone who cannot see that your spouse is structuring their entire life schedule around getting drunk — and you’re stuck in that schedule, too. For years. Till you leave them and start living with someone else who doesn’t seem like a much better choice.
  • Losing your spouse to cancer at a relatively young age, when you have two young kids, and never getting those kids proper counseling help for their loss… and marrying someone who looks exactly like the spouse you lost and you don’t really love, but is a good parent for your kids… and burying yourself in a very extreme religion to dull the pain of your choices.
  • Having a lot of health issues that are directly related to lifestyle — eating foods that are bad for you, keeping a schedule that is unhealthy, and ignoring the warning signs your body is giving you — and being progressively more crippled each year from the foods you eat and the way you live your life.
  • Spending your life in a profession that is combative and antagonistic, and bringing that combativeness and antagonism into the home where you verbally attack anyone who disagrees with you, hurting and pushing people away “on principle”.
  • Choosing to marry for practical, popular reasons instead of love, then spending the rest of your adult life pining for a deep emotional connection with your spouse that has never been there, and never will be… refusing to accept responsibility for your choice in partners… and being on heavy-duty meds to dull the pain of your choices and your refusal to make different choices in your life that would suit you better but be less popular with others… Basically medicating yourself to avoid taking any responsibility for your life.

I don’t mean to be cold or unkind — my frustration comes from knowing just how much better life can be, and feeling great pain for the individuals I love and care for, who seem so stuck in the ruts they’ve grooved into their lives. We don’t have to be victims! I want to pick them up and shake them and let them know there is a better way. But it’s like we’re living in parallel universes and speaking in a different language, and they cannot hear or understand what I’m saying.

Now, I know life is never going to be perfect, for sure, and there is much pain and struggle for all of us. Most people struggle with inner demons that no one else can see, but we fight with daily. But the fight doesn’t have to be miserable. We can see it as a regular part of life that can bring us some freedom and relief — and help to define and refine our characters.

So, there is hope. At the same time, there is so much grief and loss and pain. This time of year is very hard for me, because I lost some important people around this time of year, and the autumn-time experience of loss still stays with me to this day. It’s like it’s in my cells — and I re-live it each year, even decades after those losses.

So, the theme for my life during this time of year is mourning. If I don’t do something constructive, the grief just takes over. I know I have many, many reasons to be thankful — and maybe that’s the thing that will save me — Thanks-giving — yet I cannot seem to shake this grief, this sense of having lost so much over the years of my life, thanks to TBI and the results of it, starting in childhood and on into my adult life. I cannot help but wonder, what might have been possible, had I never gotten hurt like that… had I gotten help… had people known about TBI when I was a kid, and given me half a chance. I cannot help but wonder, what might have happened, had I told someone about my head injury when it actually happened in 2004, instead of lying about it and then watching as my whole life went to hell for no apparent reason.

But no, it didn’t happen that way. And I am bereft.

This is something that I think many people fail to see and address — the losses of TBI, the importance of recognizing and mourning of those losses, and dealing with the deep grief that comes from knowing that once upon a time you could do better… that once upon a time, you took certain things for granted… that once upon a time, so much was possible… but now it’s all different. It’s not like that anymore. Maybe somewhat, somehow, but not exactly. And you have to start from scratch in many ways, and fight your way back to where you want to be — if you can ever get there at all.

Sometimes, you can’t get there as quickly as you’d like, or not at all, and then you have to let it go. You have to just cut your losses and move on.

But “cutting losses” doesn’t factor in the pain that comes from those losses, and that’s what I want to talk about today.

When I try to explain to people what it was like for me before I fell in 2004, I get blank stares.

When I try to tell them how I used to be able to just pick things up — new programming techniques, new ideas, new information, they just look at me like it’s no big deal. When I tell them how I used to be in the thick of craziness on the job, day in and day out, without any real negative side-effects, they almost don’t believe me, and they cringe if I tell them what it’s like for me now (if I even do – because nowadays, I don’t).

When I try to tell them how fluid my approach used to be, before I fell — I would see a challenge and I would rise to it without giving it a second thought — they almost don’t believe me, either.

And when I tell them how much money I used to make and how much money I was worth, the flat-out disbelieve me. Because that would be impossible for someone my age without a college degree, doing the kind of work I used to do.

This is partly because they didn’t really know me before. They didn’t know the line of work I was in, and they didn’t know what it was like to work for my employer. They don’t come from the world where I work, each day, and they have no idea just how good things were for me, and how well I could function in those circumstances, and how rewarding it all was. For people who know me now but didn’t know me before, my accounts of how things used to be just sounds like confabulation — or me making things up. Because the difference between now and then is so dramatic and so extreme, that they probably could not begin to imagine me as I once was.

As I believe I once was.

See, there’s the rub — maybe I was that way, or maybe it was my perception of how I was. Maybe I was “all that”, and maybe I wasn’t. I may never know. My memory plays tricks on me all the time, and the best that I can do, some days, is muster a “feeling” about the past that seems true.

I know things used to be different for me. I know I used to be different. Looking at my bank account, and considering the kind of work I do today, compared with 10 years ago, there is a radical difference. Like night and day. And the fact that I am struggling terribly with money these days, just maddens me. It was never like this before. Never. Ever. But now it’s a daily challenge to keep my finances in order and keep myself on track. I manage, but it’s not nearly as easy as it once was.

Money doesn’t lie. That’s the bottom line. And what my money says, is that I’m a very different person than I was before.

Hence the sense of loss. A profound and sometimes debilitating sense of loss. And I am pretty much alone in this sense, because either nobody understands what it’s like to have so much, and lose it. Or they don’t believe I ever had what I once had, in the first place. Or (even worse) they think that nobody deserves to have what I had before, so it was a kind of karmic justice that now I have such troubles.

Loss. Lonely, lonely loss.

But I cannot stay tied down in my depression. I am working my way out of a hole, and I have to handle this alone, so I have developed ways to deal with this whole grief thing.

The first thing I do, is to acknowledge it. Not minimize it. Recognize the experience of loss and grief and mourning as very, very real. And very, very important.

The next thing I do, is understand what it is that I am mourning the loss of.

I recently realized that I can group my losses into two different categories:

  • Invented Loss – the “loss” of things that I once-upon-a-time decided that I wanted and needed, but I never really did want or need. These are losses like:
    • false friends (who I once thought were my real friends) who ditched me when I stopped having so much money
    • possessions that other people told me mattered, but I just didn’t care about
    • 100% devotion and dedication to employers who were more than happy to pull the rug out from under me when I ran into trouble, and
    • public approval and a sterling reputation, regardless of how sleazy the people were whom I wanted to respect me, regardless of what I needed to do to uphold that reputation
  • Genuine Loss – the true loss of things that I really did want and need, but couldn’t hang onto, like:
    • being able to read things and understand them immediately
    • constant abundant energy
    • clear, quick thinking and definite decisions
    • my ability to earn top dollar almost without thinking about it
    • my ability to learn new things quickly and use what I learned quickly
    • confidence in my memory – things didn’t used to seem this foggy before (I’m not sure if this is a genuine or invented loss, however, because it could be that my memory was always spotty, I just wasn’t aware of it)

In some cases, it’s hard for me to tell whether my losses are genuine or invented. My memory is a classic case — it really wasn’t until I started working with my neuropsychologist that I realized how spotty my memory was. And in fact, when I think back, there are big parts of my past that I don’t remember — people always assumed that it was because I had been traumatized as a child and I blocked a lot of things out, but more and more I think it was a lot of other things, including a spotty memory during childhood, thanks to repeated head injuries.

Furthermore, human memory is notoriously unreliable, even with people who have no history of TBI. Just ask the cops. People who see the same thing will have different interpretations, and each person will be convinced that they’re right. That’s just how we’re built. It’s just how we are. TBI or no, memory is a tricky thing, so it doesn’t make that much sense for me to be upset over the crappiness of my memory. Who’s to say that anyone’s is any good?

But still — I think the thing that gets me the most is the loss of my old confidence about who I was and what I was all about. So much changed, so much has altered with me in the past years — 8 years, since my fall down the stairs a day or two after Thanksgiving in 2004 — that some days I don’t know who the hell I am, where I’m going, or what even matters to me.

Some days, I wake up a complete blank — I have no point of reference, I don’t know what day it is, what I should be doing, what I want to do… anything. It’s like everything has been wiped clean. Then I’ll sit for a little bit, re-orient myself, look at my lists, and it will come back to me. Some days, it feels like I’m starting from scratch. Completely. With no experiences from before to guide me.

And I miss that old feeling of knowing who I am and what I’m about and what matters most to me. The things that used to drive me — reading and writing and studying and grasping the secrets of my universe… the subjects that used to absolutely drive me are just not there anymore. What’s left? Other things. New interests. Different subjects that draw me in… if I can remember them.

Ultimately, that’s probably the biggest loss I deal with — losing my sense of self, who I am vs. who I think I was — and losing my confidence about who that “self” once was, and now is. The second-guessing, the not-knowing… it’s a lot to learn to handle, and it’s a lot to learn to manage. I will manage, somehow — I AM managing somehow — and do that keeps my mind off my troubles. But some days, it just gets to me.

Like today. Like right now. I have this deep and abiding sense that I have lost something very important to me, but I’m not exactly sure what that is. I’m not sure if it’s one big thing, or if it’s a lot of little things, and as much as I am determined to build back my life, I just don’t know if/how/when I will be able to do that to my satisfaction.

Because building “back” is a point of confusion, to begin with. My memory of how things once were is not great, so where’s my point of reference? My memory of how I once was, is also not great, so how do I know if I’ve even gotten “back”? I think the thing for me is having the old feeling again — having a sense of who I am and where I am and how my life is… getting that old sense back. If it’s even possible.

Of all the issues that come with TBI, the grief business is probably the most difficult to handle, because it is so hidden, it is so personal, and it’s hard to find others who understand the extent of your loss. Everyone wants you to move on. Everyone wants you to focus on the positives. Everyone wants you to get back to normal and quit feeling sorry for yourself. But TBI can take from us the very things that make us who “we” are — and when you lose that… even if it’s just for a while… it can be vastly unsettling, and it can linger at the back of your mind, like a jabbering monkey, making it hard to just get on with your life — and do the things that will bring you back to where you want to be.

I’m not saying it’s the end. But grief and mourning for the things we have lost — especially realizing that the loss does matter — is an important part of recovery. And until we really look at it and find a way to deal with it constructively, it can overtake us and run our lives without our even knowing.

That’s what I think about it, anyway. And now, it’s time for me to stave off this depression and get my circulation moving. Time for a walk — perhaps in the woods.

Onward. To the future.

Keeping focused on what matters right now

Figure out what matters most, and stick with it till it’s done

One of the things I’ve been working on, lately, is keeping focused on what matters to me right now. This is a two-part challenge:

  1. Keeping from getting pulled in different directions by competing ideas and activities, and
  2. Keeping from getting too rigid in my thinking about what I should be doing.

The first “prong” of the challenge is your standard-issue ADD/ADHD/TBI-related distractability. I find that in the course of my day, I can get pulled in a hundred different directions in the space of a few hours. I get pretty excited about different things — opportunities, ideas, activities — and it works against me. Now, I’m one of those people who is always finding intriguing things to follow up on, and that’s a far sight better than being depressed and glum. On the whole I find life a fascinating adventure, more than a dreary chore to be endured. The problem with getting excited about different things, is that they end up taking me off in different directions, and then at the end of the day when I look back, I am no closer to achieving what I set out to, first thing in the morning.

And that dims the bright light of my day quite a bit. In fact, it puts me in a bit of a “bipolar” cycle — I get up in the morning so excited about everything and what I want to accomplish. And I go-go-go all day long, flitting from one thing to the next with lots of energy and exuberance. But by the end of the day, I’m wiped out. Just beat. And when I review my progress — and see that I’ve not done as much as I intended (sometimes I haven’t done anything I’ve intended) — it depresses me, and I feel terrible.

Ups and downs. Roller coasters. All that.

With regard to the second “prong” (not getting too rigid in my thinking), I find that in my eagerness to stay on track (often in the days following a “cognitive free-for-all”), I can get very locked into a set routine and a specific way of doing things.

Take today, for example. I have a handful of things I need to do for A Big Project that I’m working towards, and I am also going out of town for Thanksgiving and also some international business travel two weeks after that. So, for my Big Project, I have less time than I’d like, to focus on it. So, I had it in my mind that I was going to follow my standard weekend routine, so I could have the kind of structure that will help me stay on track and make steady progress towards my Project.

The only thing is, I got myself locked into thinking that I “had” to do certain things that I don’t really need to — and those things will eat up a bunch of time that I really need to do things like prepare for my travels, as well as sleep and get myself good and rested. I don’t “have” to do anything, except the bare minimum of everyday upkeep that’s directly related to my work and my upcoming travels. I have some extra things I need to do, before I go in a couple of weeks, too — like make sure there’s enough money in the right bank account, and there’s sufficient oil to heat the house in my absence, the trash is taken to the dump, and all the things I usually do will be all set for my spouse, while I’m away.

I have extra things to do. I can’t be running around doing non-essential things, just because they are part of my weekend routine and they provide a familiar structure that I can work in. I can’t get all rigid and hidebound — I need to stay flexible and loose and keep focused on what is most important to do over the next two weeks.

So, to keep myself on track, I am keeping a master list of what needs to be done, what I need to collect, what I need to dig out of the closet in my study, and what I need to put in order. Having a list is very helpful to me — so long as I don’t get bogged down in the details. That’s a killer. I tend to go overboard, figuring out what all I need to do, when  simple list would suffice. Gotta keep it simple, or I’m going to overwhelm myself.

Check my bank balances and make sure I have enough money in the travel account, as well as have specific bills paid off before I leave… Make sure all the trash is taken out of the garage, and I’ve moved things around in the garage to make room for my spouse to move freely… compile a list of numbers I have to keep things going… make sure I have international coverage on my phone (because I’m going to be away overseas for a week)… the list of just what needs to be done is pretty extensive, so if I get into detailing my exact steps for each one, it will just bog me down.

I’ve noticed more of that bogging down, lately. It might just be anxiety that’s driving me, but it’s making me — and everyone around me — nuts. Too much detail. Truly. People are actually telling me I’m micromanaging over nothing, which is true. Again, that rigidity. Have to do it a certain way… or else.

And that’s no good.

So, it’s all a process — and it can get pretty messy, if I don’t keep well-organized. The first step towards getting organized is realizing just how scattered I can get… and making an effort to collect my thoughts and get them all down in one place. I’m visualizing the “flow” of the next three weeks (which includes my time traveling for work), which helps me figure out what I need to do, and when.

Just having things figured out and settling into place in my mind goes a long way towards settling me down and keeping me from getting anxious and uptight — which leads to more distractability. And not having as much distractability and manic chasing, helps me to not get so tired — which makes me more scattered. Figuring things out and writing them down — keeping focused on what matters most right now, and not getting pulled off in a thousand different directions because another idea seems interesting.

Sustained Focus — that’s the ticket.

Enough talk. Time to work on my list and then take action.