The TBI/Concussion Energy Crisis – Part 2 of 2

This is Part 2 of a long post that I’ve split into two parts. The first part is here:

Running on empty?

Long-term outcomes after mild traumatic brain injury — and persistent post-concussion syndrome that doesn’t resolve in the usual couple of weeks — have baffled researchers and practitioners for a long time, but to me it makes perfect sense. There is a cumulative effect of stress and strain that comes over time. There’s plenty of research about the long-term effects of chronic stress. But there doesn’t seem to be a lot of research about the levels of stress among mild TBI and concussion survivors.

Everybody seems to think things just resolve. And they don’t seem to think it matters much, that we are no longer the people we once were. They don’t seem to realize what a profound and serious threat this is to our sense of who we are, and our understanding of our place in the world. At most, it’s treated like an inconvenience that we’ll just see our way through with time.

But it’s bigger than that. Losing your long-held sense of self when you’re a full-grown adult, with a full docket of responsibilities and a whole lot invested (both by yourself and by others) in your identity being stable, is a dire threat to your very existence. It is as threatening to your survival, as surviving an explosion, a flood, an earthquake, or some other catastrophe that nearly does you in.

It’s traumatic. But because it’s not over the top and in your face and dramatic — and it doesn’t register on most imaging or diagnostic equipment — people think it just doesn’t matter.

Or that it doesn’t exist.

Frankly, the professional community should know better — especially those who work with trauma. They, of all people, should know what trauma does to a person — in the short and long term. I suppose they do know. They just underestimate the level of stress that comes from losing your sense of self and having to rebuild — sometimes from scratch. I’m not even sure they realize it exists.

But they do exist. Dealing with the daily barrage of surprises about things not working the way they used to… it gets tiring. Trying to keep up, takes it out of you. I know in the course of my day, I have to readjust and re-approach many, many situations, because my first impulse is flat-out wrong. I have to be always on my toes, always paying close attention, always focused on what’s important. Always reminding myself what’s important. I have to perpetually check in with myself to see how I’m doing, where I’m at, what’s next, what I just did, how it fits with everything else I’m doing… Lord almighty, it takes a lot of energy.

What’s more, those stresses and strains are made even worse by being surrounded by people who don’t get how hard I’m working. I swear, they just have no clue — my spouse and my neuropsych included. They seem to think that this all comes easily to me, because I do a damned good job of smoothing things over and covering up the turmoil that’s going on inside of me. I have trained myself — through a combination of techniques — to at least appear to be calm in the midst of crisis. Even when things are falling apart around me and inside me, even when I am at my wits’ end and am about to lose it, I can (usually) maintain a calm demeanor and chill out everyone around me.

Heaven knows, I’ve had plenty of practice over the years. If I hadn’t learned to do this, I would probably be in prison right now.

No, not probably. I would be in prison. I like being free and un-incarcerated, so I’ve learned to hold my sh*t.

Which is where sleep and proper nutrition and exercise come in. Because after years of thinking that sharing my experience with the ones closest to me would enlist their help, I’ve realized that doing that will never ever achieve that goal. People just don’t get it. Even my neuropsych doesn’t get it. Everyone has this image of me as I present to them, which is totally different from what’s going on inside of me.They seem to make assumptions about how I am and what I am and what life is like for me, that have nothing to do with how things really are.

Inside, I have a ton of issues I have to manage each and every day. Today, it’s

  • confusion & disorganization
  • anxiety
  • irritability
  • neck, back and joint pain
  • noise sensitivity
  • dizziness
  • ringing in my ears that’s not only the high-pitched whine that never goes away, but is now accompanied by intermittent sounds like a tractor-trailer back-up alert beep. Nice, right?

And that’s just for starters. Who knows what will happen later today.

But I’ll stow the violins — the point is, I really can’t rely on others to figure things out for me — even the trained professionals. I can’t rely on them to understand or appreciate what my life is like from day to day. I need to rely on myself, to understand my own “state” and to manage that state on my own through nutrition, adequate exercise, rest… and to advocate for myself to get what I need.

I have to keep those needs simple — rest, nutrition, exercise — and not complicate matters. Getting more elaborate than that just works against me. It’s hard to explain to people, it gets all jumbled up in my head, and the other people try to solve problems they don’t understand, in the first place.

On the one hand, it can get pretty lonely. On the other hand, it’s incredibly freeing. Because I know best what’s going on with me, and I know I can figure out how to get that in place.

The bottom line is — after this very long post — TBI and concussion take a ton of energy to address. It’s not a simple matter of resting up till the extra potassium and glucose clear out of your brain. There are pathways to be rewired, and they don’t rewire themselves. Depending on the nature of your injury — and a diffuse axonal injury that frays a ton of different connections, even just slightly, can introduce a wide, wide array of frustrations and hurdles — you can end up spending a ton of time just retraining yourself to do the most basic things. Like getting ready for work and making yourself breakfast without missing any important steps (e.g., taking a shower or turning off the stove).

And when you’re trying to rewire your brain and retrain yourself to get back on track, at the same time you’re trying to maintain your life as it once was… well, that’s a recipe for a whole lot of hurt, if you don’t give yourself the energy stockpiles you need to move forward, and if you don’t take steps to regularly clear out the gunk that accumulates in your physical system, as a result of the stresses and strains of the rewiring process.

That being said, I wish that someone would do a study on the stress levels of concussion and other mild traumatic brain injury survivors. We need to collect this data, in order for professionals to better understand us and our situations, and to better know how to treat us.

For the time being, however, I’m not holding my breath. I know what works for me, with regard to my recovery — having someone non-judgmental to talk to about my daily experience, keeping records of my daily life so I can self-manage it, regular exercise, pacing myself, good nutrition, intermittent fasting, keeping away from junk food, adding more high-quality fats and oils to my diet, and getting ample sleep with naps thrown in for good measure.

Those are really the cornerstones of my recovery. When I do all of them on a regular basis, I get better. If I overlook any one of them, I slide back in my progress. It’s an ongoing process, for sure.

The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>

Picking my battles carefully

Save your energy…

So, this week has been interesting. I’ve been working very long hours (12-14 hours a day), trying to clean up a lot of outstanding tasks that are months late. In the past, it made me crazy to be late on anything, or to fall short on anything I undertook. It just wasn’t allowed – and it worked out in favor of my standard of living, because nobody loves an overachiever more than a company that knows how to put that OCD impulse to good use to make a lot of money.

I’ve done well by my employers, if I say so myself. And before my TBI in 2004, I’d long been in the habit of never tolerating anything less than my best effort. I was always locked on target to continuously out-do myself, no matter what. But then I fell down those damned stairs, and things started to unravel. So much fell apart — slowly and quickly — and before long, I was just happy to be getting through the day.

One of the toughest things about my TBI after-effects, is having to deal with sudden onslaughts of all sorts of mediocrity. I was in a meeting the other day, discussing a project that I was doing a very poor job of managing. The whole thing had just gone off the rails, and I was a little freaked out about the whole thing. In this meeting, we were trying to come up with solutions about how to handle things, and I was getting very turned around and confused, not connecting the dots, and generally not representing very well.

It was pretty disconcerting for me. I’ve long been accustomed to being one of the “with it” people in the room, but that day, I was definitely not. So, I stepped back and just let the other folks who were with it talk amongst themselves and come up with a better solution.

And it worked out okay. We finished the meeting on an up note, and I got some new ideas about how to fine-tune the way I work with other people.

It just wasn’t a very good feeling, to sit there all foggy and clueless, not following the conversation and not being much help at all.

I hate this kind of chaos. I feel stupid and dense and impaired. Right now I’m feeling pretty impaired, actually, because I am tired, I am stressed, and I need to start working on some of my take-home tasks in a little bit. I need to hammer out some work before the weekend is over — and my spouse is inviting company over tonight, to stay into tomorrow, which takes a bunch of productive hours away from me in the morning. Shit. Oh, well. Welcome to my chaotic life — that’s just how it’s been, lately.

Actually, now that I think about it, the chaos has been ongoing since before the holidays — since before Thanksgiving time, when the holiday scheduling difficulties started to happen. So, since around the middle of November, things have been up in the air, and I’ve just been treading water, trying to get things done, to precious little avail. Three full months of uncertainty and scheduling problems, holidays and travel and jet lag and exhaustion… and more.

It’s just sucked so terribly, it’s unreal.

It’s almost as if the people who are in charge of setting the stage just don’t give a damn about whether or not anything gets done. It’s all on us to “manage” — and if we can’t keep up and can’t meet our goals and get everything done that we need to get done, well, it’s on us. Nobody seems to care anymore if things are actually done.  Nobody actually seems to care if things are left half-baked and fraught with uncertainty. It’s almost as though nobody cares about actual quality, as long as the “experience” people are having is acceptable.

Maybe I’m old-fashioned, but it seems to me that something should actually get done, every now and then.

I feel a rant coming on, but I’m going to step away from that, because it’s not worth it.

And here’s the crux of it all — I’ve been picking and choosing my battles, figuring out what matters most to me, and focusing on that, and letting the rest of it go. Some things I just can’t afford to get worked up over — things like sitting in a meeting and not feeling like I’m actually following everything that’s going on… or falling short on one project after another, and yet deciding to not get crazed about trying to keep up…

It’s best I concentrate on focusing on the good that I do have, and leaving the rest of it alone.

My time is much better spent on figuring out what I want to do with myself, and how good I want my life to be, instead of bitching about how bad things are right now.

It’s funny — I’m reaching a slightly different perception of my employer, these days. They keep taking things surveys at work asking about how people feel about working there, and every year the scores come back lower and lower. It’s kind of sad, that there are so many miserable people working there. At the same time, though, I think it has a lot to do with the character of the people working there. The fact of the matter is, we are responsible for what we make of things. All of us at work can make our situations into anything we want or need. We’re not helpless victims, and we have the power to control our attitudes and our gratitude.

And it occurs to me that maybe the problem isn’t so much that I’m working at a terrible place. Maybe the problem is that I work with a bunch of whiners. Thousands of them, in fact. They do a lot of bitching and complaining about just about everything under the sun. And I get really tired of hearing them bitch and complain about every little thing. It’s really up to us, to make things right — not to expect someone else to come along and fix it all for us.

At some point, you’ve gotta start acting like an adult.

I mean, geez, if people knew half the crap I have to wade through, just to get through the day, they’d probably run screaming from the building. But when you have to deal with it, you have to deal with it. The pain, the confusion, the fatigue, the emotional roller-coaster, the constant ringing in my ears, the unpredictable coordination, and this brain that just loves to crap out on me at just the wrong times… it’s just how things are, and I have to deal with it.

So, I’ve got a lot on my plate. And I have to pick and choose the battles I fight. The fact of the matter is, I am working with less working memory capacity and some pretty significant attentional issues, so if I get all worked up over things and I spend all my energy fighting against stuff that’s not going to change from me getting bent out of shape… then I just hurt myself. And I don’t want to do that. Getting a handle on what I can change, and focusing on fixing that, rather than spending a lot of time and energy beating myself up over things that are already done and can’t be undone, is a much better use of my time and energy. And it pays off in very big ways.

This weekend, I’m battling a bunch of backlogged work that I need to sort through. I’ve got so much to do, it’s crazy — and it’s all sorts of work, both tactical and strategic. So, no, I can’t worry about sitting in that meeting, earlier this week, and losing my place, not following what was going on, and getting turned around. Screw that. I don’t have the time. I’ve got to put my focus on other areas where I can be sharp, and I can be reasonably sure that I will make progress. Fine points like doing math on the fly and seeing quickly how a bunch of different moving pieces are put together… those are definitely not my strong suit when I’m stressed and exhausted (which was all last week — no, the past three months, actually). I just can’t let that derail me — I need to find where I can make up for those gaps, and concentrate on that — like just plain getting things done in the quiet and comfort of my own home. Like looking at bigger picture pieces of the grand puzzle.  And keeping my motivation high and intact.

So I’ll be taking a lot of time this weekend to just settle in and do the work that’s in front of me. It’s not terrible work — I actually enjoy it. There’s just a lot of it, and it’s really disheartening to be so far behind… and have people at work complaining about it, too.

So, off I go. Got lots to do, and I’m feeling pretty good about the idea of having it all done.

Onward.

Everything that makes up the day

It’s not always clear

Today’s Fog Factor: 70% “with it”

Well, I’m glad I had a nap yesterday. I got a little less than 7 hours of sleep last night, but I got right up, a little after 6 a.m. I really wanted to get into the day — get my exercise, eat my breakfast, and get some writing done before I get into my full-time packing.

I started to get a headache when I was riding the exercise bike, and now my head hurts. I am supposed to get headache specialist info from my neuropsych, but they never got back to me, even though they promised. This isn’t the first time they’ve forgotten about me. Ah well, I may be better off taking care of things myself. I would like to see a neurologist or someone who can tell me if it’s a structural issue with my brain, or if it’s more about my neck and my stress level. I start to get a headache when my spouse is going on and on about some drama at work, so I’m guessing that it’s a stress thing — at least in part.

I guess I need to get back to my meditation exercises again — just training myself to keep calm in the face of whatever comes my way. Things at work have been intense, and that’s not helping. I need to improve my skills at handling what comes down the pike – no matter what that may be.

I did a little bit of writing and reading, this morning, and I’m about ready to start packing my bags for the trip. I need to collect my clothing, do some laundry, and get my pieces all squared away. I have a list of things to do and take care of.

I’ve got about 7 hours before I need to leave for the airport. I have to check in when I get there – I can’t check in online, unfortunately, which puts a real crimp in my plans today. I need to give myself an extra 30-45 minutes, so I’ll need to leave the house earlier than planned. I need to review my list of everything that needs to be done, so I don’t miss anything.

With any luck, this will be my last trip in a while. They are cutting down on travel at work, so that could relieve me of the constant pressure to get ready to go away, and then recover from coming back. What a waste of my precious — and very limited — energy.

I really just want to devote as much time as I can to my own projects and not have my job take over my life, as it has in the past. It’s bad enough that it already consumes so much of my time and renders many other hours pretty much useless to me — because I’m so tired.

I’m making the best of things, of course. I’ve given up fighting it, and now I’m just going to get into my day and live it as fully as possible, whatever comes down the pike. Whatever the day brings, I need to be fully involved in it – not just up in my head, and not standing at a distance. But in it.

This is really the thing that saves me in my TBI recovery — being involved in my life – up close and personal – and not letting setbacks keep me from making progress. There is so much that is a lot more difficult for me, than I’d like, and I really hate my life, some days. I think back on how things used to be, and everything now just feels so strange and foreign. Things used to feel like they flowed. I had what I thought was a very fulfilling life, with hobbies and pastimes that really gave me a sense of belonging. Then I got hurt, and everything changed, and getting back to some semblance of normalcy — at least feeling like there’s some semblance of normalcy — has been a daily challenge.

Now, though, it’s feeling more “normal” to me, and I’m finding my way back to things that used to be part of my everyday life. Reading. Writing. Being active in my community and having friendships to fall back on. TBI can be so very alienating, because of the personality changes — people who used to like you for who you were, no longer have that same person to like. So naturally a lot of them move on, because you’ve almost broken a promise to them about being the kind of person you are “supposed” to be.

Also, your tolerance for the way certain people are can change a great deal. I noticed that in my own life, a lot of the “endearing” characteristics of other people, which I could accept and gloss over, became glaring points of conflict with me. And I became a lot less tolerant of other people’s flaws and foibles, so I couldn’t bear to spend waste more time with them.

As an example, I used to hang out with a lot of people who had a real victim mentality — like all the world was against them, and they had to constantly struggle against the dominant paradigm to just break even in their lives. I used to hang out with a LOT of escape artists — devotees of role-playing games, computer games, renaissance faires, comic books, and other alternative culture types. That was my world — all full of arts and music and imagination. But it became pretty apparent to me, after I got deeper into my TBI recovery, that so much of that was a convenient way to avoid dealing with harsh truths about oneself, instead of taking action to make right the things that were all wrong.

And I realized, too, that so much of the world that my friends thought was out to get them or designed to make their lives miserable, was a result of how they were thinking about those circumstances. They kept telling themselves that “the mainstream world” was designed to destroy them, and they were in a constant state of conflict and antagonism. So, small wonder that they couldn’t get ahead in life. They came across as angry and aggressive with everyone who wasn’t just like them, and they boxed themselves into a version of life that only existed in their minds.

And because I realized more and more, just how much of what they believed was originating within them… and I saw how much that was costing them, in terms of time and energy and positive living… I just couldn’t spend a whole lot of time hanging out with them anymore. That, and the fact that I was so wiped out after working all week, and I just needed to have time to myself to regroup and recuperate. I just couldn’t stand their bitching and moaning and blatant assumptions about life, which only served to get in their way.

The world wasn’t the problem. THEY were the problem.

And so I dropped a lot of them and I’ve gone my own way.

It’s been kind of lonely, to tell the truth. It’s tough to connect with other people like you, when you all have so little energy to spare, beyond basic survival. And the people I’ve tried to stay friends with and tell about my TBI issues… well, they just weren’t having it. They were so convinced that “there’s nothing wrong” with me — and a lot of them still are. They can’t see the internal issues I have to deal with, each and every day. They can’t see the struggles, the pain, the frustration. There’s not much point in trotting them out for others to see, because they just get nervous if they don’t know what it’s like. And they don’t know what to say.

So, it’s complicated. And it’s challenging. But in reality, is sustaining a TBI and not being able to shake the symptoms really that different from any other kind of loss? Losing your home, or your marriage, or a child, or a loved one, or a job? Or any other things that make up part of your identity in the eyes of others? People fall out of your life, they move on, they don’t know what to say to you… and sometimes they are never replaced. I think it comes with life. And getting older. And realizing who you are and what you will — and will not — tolerate in your life.

So, while I have a lot fewer friends in my life, and my activities have really pared down to the most essential of activities, and I’m not nearly as social as I used to be, that’s all fine. Because I’m fine.

I’m fine with how my life is now. I’m fine with things being so much quieter, and having a lot more time for the things that matter most to me. I’m fine with not being surrounded by people who are convinced the world is out to get them. And I’m fine with what the day has to bring.

Because being in the midst of my daily life — all the little details, as confounding as they can be — and experiencing it all, fully alive and engaged in my own life, is what brings me back to myself.

For many years after my various TBIs, I held back and was off by myself in a world of my own inventing, like so many of my ex-friends. And I didn’t really let life in. It was safer, but it was no way to get myself in shape to live my life. I avoided a ton of experiences, because they were too overwhelming or too confusing for me. And I thought I could avoid all that and prevent the anxiety that came with it.

Now, I generally accept that I’m going to get confused and overwhelmed, and I can plan for it. I expect it. So, it’s not such a terrible thing. It’s just one more aspect of life I have to manage. And so I do.

All that the day brings — all it has to offer — it’s there for me.

Now, what shall I do with my life today?

Let’s find out.

Onward…

 

 

 

When everyone gets to feel their limits

Slow down folks – it saves lives

Winter storms have really knocked the hell out of many parts of this country, this year, and as I watch the news and hear about regions with thousands of people stuck on highways, and snow coming down, down, down, there’s a part of me that’s a little grateful for the experience.

NOT the bad experiences, where people are killed or maimed or otherwise injured, but the experiences where everyone gets to find out what their/our limits are, and we all have to slow the heck down.

That part I really enjoy — the forced patience, the not-going-anywhere-fast conditions, the curtailed mobility… for once, I am not the only one who is forced to improvise, to get through the day. I don’t revel in the discomfort of others (well, maybe a little bit). It’s just that for once, I’m not the only one in the room who has to think through and re-think every danged thing I do.

You know, it’s funny — I’m so functional on a daily basis, and I do such a thorough job of covering up my issues around people who have no clue (who are the people I can’t afford to show/tell, because they don’t deal well with any sort of differences of ability)… I often end up tricking myself into “buying my cover”. I tend to be so focused on what is in front of me, blocking out any distractions around me, that I don’t even notice the things that would make other people absolutely insane in a relatively short period of time.

Seriously, I can be incredibly focused. My former boss actually mentioned this on my last performance review — that I blocked out distractions and got a shit-ton of work done (they didn’t say “shit-ton”, but it was implied, and it was quite true).  But that focus also keeps me from noticing the busted-up things that need to get fixed: my injured neck and shoulder that refuse to heal up, the headaches I develop anytime my heart rate goes above 120 (I’ve been tracking it for the past couple of weeks at the suggestion of my neuropsych).

And then there are the things that never seem to go away. The vertigo and nausea that seem to follow me everywhere, the constant ringing in my ears, the chronic aches and pains that never exactly go away, just move around to different places. Fatigue, sensitivity to light and noise and touch, insomnia, attention issues, emotional lability, panic/anxiety, anger spikes, raging behavior, confusion, difficulty understanding, trouble hearing, slowed processing speed, limited short-term working memory, balance, vertigo issues, difficulty reading and learning new things, nystagmus, tremors. And so on…

If I paid attention to them all, I’d never get anything done.

I’m so focused, I don’t even notice when I get hurt. Like the big-ass bruise that showed up on the back of my right hand yesterday. You’d think I’d remember hitting my hand that hard, while I was doing some work the other day. It’s at a really tender spot on my hand, too — where the tendons/ligaments are close to the skin, and it hurts like hell when I knock my uninjured hand against something.

That’s the kind of injury you’d think I’d notice. But no, I have no recollection of having hit my hand, and for all I know, I didn’t even notice when I got hurt.

This has happened many times, before — bruises typically show up on my legs and arms after I work, and I’m not surprised. I’m a bit of a bull in a china shop, that way, so I expect to get banged-up. I always have, and I figure I always will. But not being able to remember when it happened… that’s a challenge. How the hell am I supposed to explain that to doctors, when they ask me what happened? The worst case scenario is that they think I’ve got some serious mental illness from past trauma, where I block out the experiences (some of my therapist friends of years gone by ran that one on me), and they think I’m living in an unsafe environment.

Please. It’s not that. I just can’t remember.

I’ll have to make a note of this and discuss it with my neuropsych. That, along with the patterns of developing headaches after exercise and raising my heart rate.

But I digress.

The point is that I have really changed how I live my life, to work with all these issues I’ve got. In the past, before I started my TBI rehab, my life was really run by all my issues, and I just accommodated them and lived in a very limited state. I let my emotions run me, and I didn’t deal well at all with all the “details” of my neurologically varied life. Everything ran me — through my emotions. The anxiety was out of control, I battled through each day with constant headaches and dizziness and pain, I struggled constantly with the ringing in my ears and the memory problems, and I was frankly just grateful to get through the day.

Over the past 5 years or so, since learning about TBI and getting a much better understanding of my situation and what I can do about it, my approach has changed. I do what I can, I accommodate what I can, I address what issues I can, but I don’t let them stop me. I do what I can, learn what I need to know, and just keep going. And that means a laser focus that shuts out everything that might distract me from my ultimate goal.

My ultimate goal can be as simple as getting out the door and on my way to work on time. Or it can be as dramatic as launching a new business venture that has a lot of promise.

But even with all my focus and intention and intensity, I still have to take things slower than I’d like. I have to slow down and think things through much more thoroughly than ever. I’m much more deliberate than I have ever been. I realize now that the impulsiveness that I always thought was “freeing” is actually keeping me from really living the best life possible. And when I don’t slow down, I pay the price for careless mistakes. Pacing myself has turned out to be my secret weapon in getting my act together and getting on with my life.

But the slower pace still makes me nuts. Some days, I don’t want to have a list of things to be done, and check it frequently to see what I’m supposed to be doing. Some days, I don’t want to have to think through every little thing and weigh the pros and cons. Some days, I just want to wing it and see what happens.

Unfortunately, I often discover that “winging it” sends this little bird into the engines of a passing plane. Not good. And not just for me.

So, I learn — and re-learn — the best way for me to do things. Even though it makes me nuts, it’s worth the effort and inconvenience.

But it gets lonely, for sure. Some days, I feel like I’m the only one in the room who’s not “getting it” immediately. I have to ask my coworkers to repeat themselves. I participate in conversations at work that I feel like I should understand, but I’m not getting all the details. And the details that others seem to grasp very quickly, I’m still muddling over in my head, which is painfully apparent when I am speaking up later in the meeting, after everyone has moved on, but I’m still stuck on earlier details. It’s embarrassing. I’ve got more professional experience than all the folks in the room combined, but I can’t seem to access it nearly as quickly as they can.

Great.

The thing that sucks the most, is that addressing this shortcoming is almost impossible. Because later on, I can’t remember the exact details of what all happened, and I can’t explain the situation very well to the one person who could help me. It’s very unclear. And I get all garbled and turned around, when I try to explain to my neuropsych. So, I suspect they don’t really appreciate the depths of my difficulties… because I can’t seem to articulate them in a way that makes any sense to them. They seem to think that I’m overreacting, that I’m getting overly emotional about things, or that I just have a poor self-image. In some ways they do get that I have issues — my accounts of road rage and picking fights with police officers is a pretty clear tip-off. But in terms of work, I just can’t seem to express what’s really going on with me with my processing speed and comprehension problems, and how much of a problem it is for me.

So, I need to come up with a better way of handling this — not only rely on my spotty, Swiss-cheese memory (such as it is) to relate my experiences, but actually write down what happens, when it happens… and give it to my neuropsych to discuss when we meet. That way,  I can record what happened at the very time it happened, so I’m not showing up babbling and blubbering and fumbling around the disorganized filing system in my head, looking for relevant pieces of information.

Yeah, I’ll find a better way to address this with the trained professional who can help me.

But it’s a tough one, because I swear to God, we could meet for two hours a day, every day, and I would never run out of issues to discuss and address… but I really need to check in with someone who actually believes in me (without some ulterior motive or hidden agenda), like they do. Seeing my neuropsych every other week is an essential boost to my self-confidence, and if I spend all my time talking about the sh*t that gets in my way, I’ll never have any positive feedback about the things that are going right, that I’m handling well.

I really need that bi-weekly boost. Because it is so disheartening to live this life, sometimes. I’m just a shadow of the person I used to be, and I’m not often a fan of the person I’ve become. I used to be so sharp, so quick, so bright. And the people who knew me “back when” whom I still keep in touch with, seem a little surprised at my present plodding state of mind, when our paths cross every few years or so. It’s disheartening, to say the least. I know I should be smarter and sharper and quicker and funnier. I used to be. But now I’m not even sure if I remember how I used to be.

It’s very “Flowers for Algernon” — like at the end of the book when the mentally challenged guy who took the meds to help his brain, is losing the positive effects of the drugs and is going back to how he originally was. It’s kind of like that for me. Only I’m not going back to where I used to be, and I don’t much effin’ care for this experience.

It’s like all of a sudden aging — and realizing how quickly you’re going downhill.

Sigh.

Anyway, I don’t want this to turn into a pity-party. I get tired of hearing myself complain on the inside of my head about the things that don’t go right. This winter, I’m not alone. I haven’t been the only person who’s been slowed down, and it’s kind of uplifting to see that just about everyone around me has to take things slower. And in fact, because I’m accustomed to taking things slower — walking more carefully on slippery snow and ice, taking my time at intersections, and being more methodical in my snow-moving and rain and wintry mix techniques — I’m actually able to move faster and better than a lot of normal people around me, when weather conditions get tough.

For once, I’m the one who’s sitting pretty, just taking care of business like this happens every day.

Because for me, it does. The slower pace, the more deliberate actions, the mindfulness and caution… yeah, this is old hat for me. And because I’m plenty practiced at taking it slow, and it infuriates me a lot less when things aren’t going exactly according to my plan. It doesn’t ruin my day like it does for so many others who can reasonably expect things to always go smoothly for them.

So, in that respect, dealing daily with all the additional stuff I have going on, is actually helpful, in trying situations.

But I could do with fewer trying situations.

Couldn’t we all…

Well, enough of my belly-aching. It’s time to get on with my day and see what’s coming down the pike.

Onward.

 

 

Watching within

“You’re feeling sleepy…” No, I’m NOT!

So, this year is off to a roaring start. I’ve already had a few situations of hurting people’s feelings — that escalated from people being super-sensitive to something I said, or how I behaved.

I will admit, I have come on very strong at times, and I have had a little “scorched earth” action, where I felt like I was either being threatened or disrespected.

Yeah, I’m not much for being threatened OR disrespected, and I will react if it seems like that’s happening. I have to watch myself, though, because that can cost me — in damaging existing relationships or nipping new ones in the bud before they get a footing.

The thing is, I need to make sure I don’t over-react, which I can certainly do. Especially if I’m not paying attention to what’s going on inside my head and veins and autonomic nervous system, I can quickly switch into survival mode over some interpretation. In some cases, I need to be in survival mode, but I don’t need to completely scorch the people who I perceive as a threat, like Smaug laying waste to so many Middle Earth towns.

Yeah, gotta watch that. Particularly when I am tired and stretched.

I had a couple of tricky situations this past week, during the conference. Even before I left the airport, I had sent an email to a colleague who is also a good friend, which really hurt their feelings. I was reacting to them running their mouth and getting me in trouble because they don’t know how to be discrete about sharing information with upper management before it’s been fully analyzed. They let a few little factoids slip, and the uber-uber-boss got wind of it and proceeded to tear my boss a new one, over what was really nothing.

Geeze. And this after I’d specifically told this person to NOT share information with the uber-uber-boss. God help us.

Anyway, the email I sent was terse, abrupt, and pretty harsh. The situation called for it — something had to be done to keep them from continuing to run their mouth. But then they got all worked up over it and pitched a little hurt-feelings hissy fit, and then it blew back on me and I had to spend days patching things up. If they’d been able to keep their mouth shut, this never would have happened. But the individual who “over-shared” has impulse control problems. They always have. They get carried away and say and do things that make them extremely difficult to deal with. I don’t doubt for a minute that it’s due to them having sustained a severe brain injury when they were younger — they got thrown from a motorcycle and landed on their face and spent the next week in a coma, then had to learn to do everything — walk, talk, function — over the course of several years.

When they get tired and out of sorts, all the standard TBI stuff comes up — impulsiveness, outbursts, emotionality, aggressiveness, confusion, disorganization… and last week, when I sent that email, they were coming out of an extremely long week that was a prime recipe for TBI meltdown — for both of us.

Because I was tired, too. And under pressure. And I wasn’t minding my P’s and Q’s, and I let things get out of hand. I wasn’t the bigger person, and I took matters into my own hands, and the result was not pretty. It’s human, it’s to be expected under the circumstances, but I don’t want to do it again anytime soon.

The second experience I had was at the conference, when I met up with some old friends whom I hadn’t seen for a long time. One of them brought their new love interest with them, because they wanted to introduce them to me and my spouse. After an initial contact at the hotel that was pleasant and friendly, I had to run out and take care of some more things, then I came back, and we spent more time all hanging out together.

That’s when things got dicey. The new Love Interest started telling us about themself, and the more I heard, the less I liked. First of all, they had dredlocks, which is a huge flag for me with white people. Something about white people wearing “dreds” pushes a bunch of buttons with me, partly because every white person with dreds I’ve ever known has come from a privileged background and they live their “alternative” lives scamming off other people. This is only my own limited experience, but every white person with dreds has given me attitude about being part of the “system” and selling out for my full-time job and my house and my regular life.

It makes me insane. Partly because I work in the “system” and have a full-time job and house and regular boring life, because it’s the only way I can function under my circumstances. I need routine. I need predictability. I need a full night’s rest, or I cannot function. At All. This isn’t by choice — it’s by necessity. Certainly, I would love to be able to come and go as I please and be all alternative and what-not and “live my dreams” and “embody my passion” however and whenever I like.

But for me, that’s a recipe for disaster. My brain is such that if I don’t have regular routine and predictability and a whole lot of really boring stuff giving structure to my life, I lose it. It’s not pretty. I become extremely difficult to live with — as the Love Interest found out.

So, there I am, hanging out with people I really love and care about, and here’s this dredlocked person making snarky comments about “white people”. As though they’re not white. And they start talking about their past, moving around here and there. Back and forth all over the world. USA – China – South America – Europe – Asia – back to the US – all over. I guess I got a bit jealous, because that’s the kind of life I would rather be living, but circumstances demanded different choices from me. It’s a little rough to move around the world all the time, when your spouse is disabled and ill, they depend on you to survive, and you can’t keep a thought in your memory for longer than 15 minutes.

According to my spouse, I got pretty aggressive with this Love Interest, firing off questions about where they lived and when. Thinking back, it was definitely an Alpha-situation, with me standing over them, like some interrogator, bombarding them with questions. At the time, I was so caught up in learning more – I actually wanted to hear more about what they did, and when. At the time, I didn’t intend to be aggressive. At least, I don’t think so. I was actually really interested in hearing what they had to say. I wanted to hear more.

But it wasn’t perceive that way, and apparently I made everyone in the room very uncomfortable. I was clueless that people were uncomfortable. I was just focused on hearing more, because my life has been so incredibly uniform and established for the past 20 years.

At the same time, though, there were some alarms that were going off in my head — so maybe I was being aggressive.

The first alarm was the dreds. The second alarm was the Love Interest trying to sell my spouse on their services doing “neurolinguistic programming” — a/k/a hypnosis — to solve some of their mobility issues. My spouse has some serious and long-standing mobility problems due to back and leg pain, and many people have told them it’s because of some emotional block or unresolved issues. Personally, I think it has more to do with them just not moving enough and not strengthening the right muscles to support their frame. They also need to lose about 30 pounds. Most healthcare professionals we talk to, feel exactly the same way. But lo and behold, here’s yet another “alternative healthcare practictioner” trying to sell my spouse on mind control techniques to solve their physical problems.

Of course, it couldn’t be done in just one session. But after an “intake interview” they could continue to work over the phone at any distance. The rate was $100/hour.  No insurance coverage available.

So, yeah, here’s this individual who’s living on the margins, pretending to be something they are not, just flitting around doing as they please, subtly slamming people like me, and they’re trying to hard-sell my spouse into signing up for hypnosis, which of course I will be paying for out-of-pocket, if it ever happens. On top of it, they’re talking to my spouse about working together to create some sort of alternative event, and I’m getting a sickly deja-vu in the pit of my stomach about all the other marginal folks my spouse has tried to work with who started out seeming so alternative and progressive, and just turned out to be nutso, flighty, opportunistic users who thought they could take advantage of the “rich” people with the salaried job, the house, and the two cars in the garage.

Come to think, of it, I’m surprised I was as polite as I was, that night. If I had really been aware of how I was feeling at that time, I probably would have 86′ed them, or called it an early night.

But like I said, I was pretty clueless about just how threatened and aggravated and antagonistic I was feeling. I was in the “zone” — or so I thought. And my memories of the evening were totally different from how my spouse describe them to me later.

Anyway, the rest of that evening went slowly downhill. I was actually feeling pretty strong, that night, and I had a good time catching up with my old friends. But the Love Interest became increasingly withdrawn as the evening went on. They wouldn’t make eye contact with me, and when we rode back to the hotel, they made sure to sit far away from me. It was weird. I mean, I tried to reach out and talk to them, but they kept their distance. Maybe because I was a representative of “THE MAN”, and/or I wasn’t playing along with their alternative role-playing game.

In the end, they barely said good night to me, and they were obviously glad to get away.

I feel badly about the situation — mostly for my friends, who were obviously fond of the Love Interest. To them, they were wonderful, from what I could tell, and it seemed like they did really care about each other. But my shields went way up – to 110% – with this person around, and I was NOT going to have my spouse snookered into yet another boondoggle that was expensive, time-consuming, far from guaranteed, and happening on the other side of the country.

Yah, not gonna happen on my watch.

Looking back, I realize now that my instincts were pretty accurate. I was “tuned in” to what was going on beneath the surfaced, and I took corrective action without going ballistic. I could have gone ballistic, under the circumstances. The warning signs were written all over the situation. But aside from some pointed questions and uneasiness-provoking directness, I didn’t go all Rambo on the Love Interest. I just made it clear that I was not buying what they were selling, I didn’t just agree with every little thing they said. And I didn’t give a shit if I did piss them off.

My friends were certainly uncomfortable, now that I think about it, and they should be. Because here is someone they ostensibly love and trust, who is probably using them for their own selfish purposes. And I hate seeing that happen to anyone I care about. My friend who is dating them has fallen in with questionable people before, and they are extremely susceptible to users like this. I’ve seen it before, and it appears to be happening again. I think it has to do with some sort of guilt from their parents having money and being community leaders, and them wanting to reach out and help the less fortunate.

In my experience, the “less fortunate” can sometimes get that way because they would rather scam others than take responsibility for their lives. And I hate seeing good-hearted people used by those kinds of scammers. So, to stand by and do/say nothing and act like everything is hunky-dory… that’s not an option for me.

This isn’t a game, folks. This is life. I know that my friends come from money, so they will always have someone to help them, should things go sour for them. They can afford to fritter away their days and years without terrible consequence (like for me and my spouse). Their parents keep them well provided for, even well into adulthood. But can we really afford to squander our lives — our precious, precious lives — on people and experiences that constantly take, and do not give?

There is so much that needs to be done in the world, and it makes me absolutely NUTS to see the talented, gifted, intelligent people in my life frittering it all away on people who take advantage of their good hearts. They fritter it away to rebel… for entertainment’s sake… or because they don’t realize just how precious and rare their talents and gifts and intelligence really are.

What a waste.

Unfortunately, I can’t spare my friends from their poor choices in love mates. But at least, in this case, I didn’t allow the User to “attach” themself to my spouse and come home with us. Yes, people got their feelings hurt, and yes, people were really uncomfortable. But I can sleep better at night, knowing that there is no way in hell that predatory parasitic Love Interest is going to come anywhere near my family again.

They tried to work their NLP hypnosis magic on us, and it didn’t work. I saw through it and took corrective action. I wasn’t consciously aware of the details at the time, while it was happening, but I went with my gut and my instinct, and as it turns out, I was — as they say — Right On, Man… Right On!

Keeping calm in the storm

Keeping focused on the path ahead

So, things have been interesting at work. Just about everyone is all worked up in some sort of uproar, because the organization is changing, people are not certain where they fit, and some people are afraid of losing their jobs.

The company is closing one of its satellite offices, where one of my colleagues works, so we’re going to have to figure out what to do if they take the severance package instead of moving closer to the home office. Frankly, we’d all prefer if they took the package, because they’re not very good at their job and they cause more problems than they solve.

I’m in “solution mode”, these days — with myself and everyone around me. People are really worked up, and they tend to look to me for some semblance of stability and perspective. I have the perspective of having been through this — a lot — in the past. In the 10+ years I worked in financial services, it was like this.

All. The. Time.

So, I know what it’s like, I know how to handle myself on the emotional roller coaster, and I know what it feels like to be going through it for the first time, whereas some of my coworkers don’t. Everyone handles it in a different way, of course, with even the “newbies” handling some things more skillfully than more seasoned folks. In part, it may be because they have no point of reference and/or they aren’t far enough along in their lives to have much to lose from a reversal of fortune. Or they may just have a better handle on their emotions.

Anyway, it’s interesting. I’m riding the wave and just going for it, taking advantage of the opportunities that arise, and doing my best by them… and keeping a level head through it all. I’m reporting to someone new again — someone even younger and less experienced than my former boss (oh, irony). The difference with this person is, we have a strong friendship, as well as a good working relationship, and I have been a really staunch supporter of them, even before we were realigned in our reporting structure.

Where they are in the reporting structure does not change my relationship with them. It may change things for them — I’m sure it will, as they move more into management — but for me, the importance of treating them well and with respect, still stands regardless of where they are in the organization. The other nice thing about having a good working relationship with them, is that I can speak frankly and openly and help steer them away from some potentially tragic situations.

If they let me. They’ll need to trust me, first. I think they do, pretty much, but that can change in an instant. I am well aware of that. So, I need to tread lightly and continue to keep positive and always look for the up-side of things. That’s my new mission and goal — to keep positive and pro-active in the midst of confusion and chaos, so that I can not only keep my own wits about me, but also be of use to others as well.

So far, it has been working out well. I have had a number of meetings with folks, and the ones where I am positive and pro-active and decisive, are the ones that go very well. They’re actually exhausting, though. It’s surprisingly hard work to keep disciplined and focused… especially when so many people around you are getting depressed and down and defeated.

Ugh.

Well, I’m not responsible for their well-being or their state of mind. We’re all responsible for our own attitude and perspectives. And so often, it’s a matter of choice. I think sometimes it’s a question of character. But that can change. I know that in the past, I have really gotten beaten up by circumstances, because I let them get to me, and my head was not in the right place. Now, after years of suffering and pain, I’m at a place where I have more perspective. It’s taken a long time to get here, but it’s feeling like I’ve got it now.

At least for today, anyway.

Next week might be a totally different thing. But I’m guessing it won’t. Because now I’m in a job that is considerably more challenging for me, than it’s been for the past years. It’s been nearly 10 years since I’ve been able to function at this level without losing it. My TBI in 2004, and the couple of years leading up to my accident, really did a number on me with job stress and pressures. It has not been easy. But with a lot of hard work and help from folks who have given me good perspective (not to mention my neuropsych, who has been pretty much of a lifeline for me), I’ve finally come around.

Maybe I would have come around on my own… that’s possible. But I have to give credit and thanks where it’s due.

I’m feeling better today than yesterday, though I am wiped out and feel like I’ve been beaten with a stick all week. This transition work is extremely taxing for me, and I’m working harder than probably anybody knows. Even harder than I know… I’m just “in it” — taking things as they come, and see(k)ing solutions where problems exist. And it’s demanding a lot of me — probably more than has been demanded of me in several years.

I’m up for it, though. So long as I can get some good rest, and I can acclimate to this new life.

Onward…

 

mTBI – Like Permanent Jet-Lag

Back to regular life…

Well… I’ve been back in my own time zone for more than 48 hours, and I’m still feeling the burn. It usually takes me about a week at home, till I start feeling like myself again. It’s weird – when I travel outside the States, I acclimate pretty quickly — I’m good to go after a day of acclimation. But when I come home, it’s much, much harder. Strange. Most people I talk to say it’s the other way around for them.

Well, wouldn’t be the first time I was oriented in the opposite direction to everyone else. ;)

Maybe it’s more a question of returning home. The folks I know who do better coming to the States, live outside the States. So maybe it’s the return home that’s the trouble.

Anyway, I’ve been thinking about this jet lag business, and thinking that given my history and the issues I have on a daily basis, I’m probably more adept at functioning when jet-lagged than most people. The “symptoms” I experience when I’m jet-lagged — foggy head, slowed reaction times, intense fatigue, general disorientation, and feeling just plain “blah” — are pretty much run-of-the-mill for me under normal circumstances. I don’t even have to get on a plane to have a full-blown case. I just need to be off my routine… and push myself… and not be eating right… and have all kinds of stress and troubles… and voila — instant jet-lag! And now for my next trick…

Or, sometimes I don’t even need to do anything. I just live my life like everyone else — which, come to think of it, is full of lack of sleep, not eating right, pushing yourself, and being deluged by a daily dose of stress and strain and troubles. So whether I try it or not, I end up with “walking jet-lag” — kind of like walking pneumonia, where you’ve got fluid in your lungs, but you’re still able to walk around and function.

So, there is some comfort in knowing that I can function under even these kinds of conditions, and it’s not that huge of a deal for me. It’s just business as usual — and then some. Actually, even though I can function, it really truly sucks to have even more strain put on me that keeps me from living my life. I swear, thinking about all the things I cannot do anymore because I am so friggin’ fried from just everyday life… all the things I choose not to do, because getting into social situations or navigating “exciting” night life sets me off and sends me into an anxiety-attack-like catastrophic response and I shut down… I’ve actually given up a LOT over the past years, because A) I lose it if I get into those situations, and B) I don’t feel like watching myself lose it… yet again.  Heck, even something as simple as going to a movie can throw me for a loop, which is not fair to my spouse. Or to me. Or anyone else around us.

So, yeah, I’ve given up a lot of things over the years because I just don’t feel up to them. I’ve started doing a lot more things in the past three years, like traveling for work and going to professional conferences and what-not… but to tell you the truth, I’d rather just stay home, read and study and explore online and write on my blog and watch movies and make a nice dinner to enjoy with my spouse, than go out and deal with crazy-ass people who love drama for the sake of drama.

I really don’t need that. It serves no useful purpose. And it makes me feel even worse than I did before. So there we have it.

Anyway, it’s time to get on with my day. Life is waiting, jet lag or no.

Onward.

Bringing light

Light is where you find it – find more art like this at http://www.atagar.com/bobsGallery/

I’ve been thinking a lot about this holiday season – and all the ways that it’s associated with light. Most of the “big” traditions I know about feature light of some kind, and no wonder — this time of year is when the days become longer, and we literally can celebrate the return of the light. It’s a physiological thing, as well as a psychological and spiritual thing. And it’s well worth celebrating.

I celebrated yesterday by walking deeper in the woods than I have in a long time. Once upon a time, when I first moved to this place, I was out in the woods for most of my waking hours every weekend, rain or shine, good weather or bad. I guess I’ve always been drawn to the forest — it was the one place I felt at home when I was a kid, and there’s something really calming about being in the woods. When I was younger, I wanted to be a forest ranger, until my guidance counselor talked me out of it because it wasn’t “practical”.

Hm.

Anyway, now I get to be my own forest ranger, and I don’t have to worry about government funding cutting me off from my livelihood, so it’s not all bad, the way it turned out. And yesterday I got a good reminder of the things that matter most to me in my life — clean air, fresh water, room to roam, and friendly, like-minded people also sharing the paths.

And I couldn’t help but think about how — for years after my concussion/TBI in 2004 — I couldn’t go into the woods. I just couldn’t. There was too much stimuli there for me. It was either too bright or too dark, or it was too quiet or it was too loud. I got tired so quickly, and when I did, I got confused and anxious. And the idea of interacting with anyone I came across on the paths, was out of the question. I panicked anytime I had to interact with someone who was out for a nice quiet hike like myself. I also got turned around and lost very easily, and since I have never had the best sense of direction to begin with, I would spend hours just trying to find my way back to where I wanted to go. I told myself I was “exploring” but the fact was, I was getting lost and had to keep walking to find my way back.

And half the time, I couldn’t remember where I’d come from. Even reading maps was impossible for me. Especially reading maps.

So, I quit going into the woods. I gave up my forest. And things were very dark and dreary for a number of years. The crazy part was, I told myself it was by choice, not something I was stuck doing, because I was so trapped in anxiety and sensory overwhelm.

What changed it? I think just living my life. Working with my neuropsychologist to just talk through my daily experience. Also, doing my breathing exercises — and exercising, period. And practicing, practicing, practicing some more at the things I wanted to do, until I could do them pretty close to how I wanted to. And learning to not be so hard on myself for being different now than I was before.

I also really paid attention to the times when I saw signs of more functionality — like when I started going on hikes again, after years away from them. Like when I was able to read an entire book, after years of only being able to read short papers — and not understand much of them at all. Like when I gave things my best shot, and found them turning out pretty darned close to how I intended — sometimes even better.

Taking the edge off my anxiety, giving myself a break, focusing on things that were bigger and more significant than my own petty concerns… those helped. Those brought light to my life.

And it continues to get better.

When I think back on how I was, just five years ago, it amazes me. I was so trapped in a dark place, confused and not knowing what was wrong with me. I didn’t understand what was holding me back, I didn’t understand what was stopping me from just living my life. I didn’t understand how confused I was or what I was confused about. I couldn’t discern the different issues I had, because it was all just a dark blob of problems that pulsed like a nebula of hurt and pain and confusion. When I think about how things are now — with so much light and so much more possibility… it amazes me.

There are answers out there, if we look… if we know to ask. There are solutions out there, if we take the time to be clear about what the issues truly are. There is hope out there, when we are willing to take a chance, have some courage, and move on — move on.

As the days lengthen and we roll towards the spring (I know, winter is just now beginning, officially)… as we take this holiday season to step away from the everyday grind and do something different with ourselves… as we try to imagine what else is out there for us… let’s all remember that as dark as it gets sometimes, the night does pass. There is always dawn and a new day, just around the corner.

Yes, let there be light.

Management matters for all those issues

check smile
One thing at a time… works

Back to everyday life. Back to my schedule. I’m a big jet-lagged, but not horribly so, as I’ve been in the past. My Christmas present this year is having a full three weeks without crossing paths – in person – with the uber-boss who has it out for me. Keep moving, keep working, keep making that effort… without their interference. And always have a snappy reply when they write about something that is screwed up… because they interrupted me from fixing it with some other “priority” before.

I’m not the only one in our team who has attentional and distraction issues.

But I think I’m the only one who actively manages mine. The uber-boss? They have them big-time. But management strategies and remediation? Nowhere in sight.

Which reminds me, yet again, of how vital it is to manage those issues. I managed my issues aggressively and proactively while I was overseas, and it paid off in a very big way. Now I’m home again (home again, jiggedy-jog) and I need to keep up the good work. Take care of things right away, instead of sitting on them. Manage my time. Keep my energy up. And take breaks when I need to.

Life is a hell of a lot harder in fact than I tend to think it is. And I have a lot more difficulties than I tend to expect I will (with supposedly “simple” things). I am living in this different country, each and every day. Discovering how I am misunderstanding what’s being said… discovering that I need to listen more closely and ask more questions… discovering that I am not being clear, when I think I am at my clearest… and discovering that I am being perfectly clear, when I doubt myself the most. Each day, I walk out into a new world, with my memories telling me one thing, my sensations telling me another, and my hopes and dreams, recollections and regrets speaking different dialects all their own. And life goes on.

I step into the day, I step into the world. I may know what I think I “know” or I may not. I may be right about what I am convinced of, or I may be mistaken. I may have a clear head and a strong heart, only to find that my clarity and strength are working against me or are clear and strong about the wrong things.

In any case, life goes on. And so do I. It is early morning, and with the time change, my head feels like I am already halfway into my day, while my body knows it is still dark outside. Head and heart and body and spirit all have a chance to align in the next two weeks, before the Christmas week activities begin. On it goes. Today I make the most of what I have and what I can.

On it goes.