Finding my way through the country I used to recognize

Sometimes it all just goes away

Yesterday was a good day. I was riding high on the boost I got from work, and the day turned out pretty cool.

The more I think about the compliment I got at work on Friday, the more it means to me. It’s really sinking in, and I’m “letting it in” (as my spouse urges me to do). I don’t like to get into patting myself on the back too much – no sooner do I get really comfortable, than the rug gets pulled out from under me, and I have to work my way back to a place that’s good again.

Over the past two days, I’ve been looking back at the way my life has developed — how it was in the days and weeks and months and several years after my TBI in 2004… and how I’ve re-ordered it in the meantime. I have made huge progress — thanks to getting regular support from folks who don’t treat me like there’s something wrong with me (it’s important to have some of them in my life, because so many people seem to think I’m not quite “right”), as well as constant WORK.

It’s been a long, long road back, through the disaster area that was my life for so many years. Like the tsunami in Japan that devastated so many lives in cities and villages, TBI tore through my life and trashed a lot that used to be reliable.

It sounds weird to me, thinking about how devastating the damage was, relative to my injury. I had a “mild” TBI — a concussion. I wasn’t knocked out more than a second or so. I didn’t end up in the hospital, hooked up to tubes and machines. I wasn’t in a coma. I didn’t have to relearn to walk and talk. But within a few years after my fall, my life looked like the picture of Japan above.

And at the time I realized just how bad things were getting, I thought the good stuff was gone for good. I thought I was gone for good. I couldn’t imagine ever coming back.

But apparently I have.

It’s been a balancing act — making concessions here and there, and pushing forward with things that meant a lot to me. There are certain things I had to let go, and other things that have come back to me.

Three things that I’ve had to change are:

  • How quickly I do things
  • My sleep frequency and patterns
  • How I live my everyday life

One thing I can’t do anymore is the “rush” thing. It’s confusing and exhausting, and I hate it with every fiber of my being. I used to get a charge out of it — a real rush. But not anymore. Now it just screws everything up. I’ve had to slow down a lot — for me, that is. Compared to others, I’m not going that much more slowly, but for me, it feels like I’m moving at a glacially slow pace, and it makes me nuts. But I have to do it, so I do.

Another thing that I’ve had to let go of, is staying up till all hours of the night/morning and then being able to get up the next day and go to work and be fine with it. That’s gone-baby-gone. If I don’t get at least 7 hours the night before, I struggle all day. I might not feel tired, but I can definitely tell I’m impaired. It’s just not worth it to me, to get all ragged around the edges and have to push through. Adrenaline is all very well and good, but it’s no substitute for a good night’s sleep.

I also need to actively manage my life with notes and reminders. If I don’t set reminders and keep notes for myself, I lose track of a whole lot of things I need to not lose track of. It’s pretty bad — especially when I’m tired. Sometimes I “rebel” and try to wing it – and then I learn again what a bad idea that really is. Keeping notes and reminders lets me focus on what’s in front of me, without needing to keep the reminders and to-do items in the back of my mind all the time.

I have to do a lot more preparation, too, than I used to. I need to preview my days and figure out what I’m going to be doing, and how. I need to actively manage my entire day, making sure I’m doing things at the right times and in the right sequence. If I don’t, it spells trouble.

Making accommodations for how I’ve become isn’t much fun. It’s a little depressing, to tell the truth. I want things to be like they used to be. I want my brain to be like it used to be.

But that’s not going to happen. Not like I think it’s going to be, anyway.

Actually, though, the accommodations I’m making for my brain are helping me in many unexpected ways.

It’s actually good practice to take things more slowly than I did before. This is not only because of my brain, but because of the greater complexity of my life, compared to how it used to be. Ten years ago, I wasn’t juggling my own logistical issues with the intense health issues my spouse has, along with being the only wage-earner in the house. Both of us were working and earning okay money, and we were both self-sufficient. Then the sh*t hit the fan, and I now have to manage a lot more for both of us, because my spouse just isn’t as capable as they used to be.

On top of that, my job is now more managerial than before. I’m managing projects and leading teams, so I have to factor in a lot more in the course of each day — and this spans not only this country, with coworkers in multiple time zones, but also overseas with colleagues in Asia and Europe to accommodate. Work has gotten way more complicated than it was, just a decade ago, and the nature of my work has changed as well. So, going fast and rushing to completion is not an option anymore. I need to consider a lot of things, including time zones and cultural differences — and also not rush myself and others in the process.

In all of this, sleep is critical.  And my relationship to it has changed a lot. I don’t have a lot of downtime, each day, and I’m exhausted by the end of it all. It’s been that way for a long time, actually — and it got that much more acute after my last TBI. I had a lot of trouble with insomnia and sleep disturbances. Just getting myself to bed has been a challenge, over the years. But where I used to really fight it, now sleep feels like a little vacation to me, when I can just let it all go — disappear into a different world. It is the ONE escape I have, so I value it like never before. I don’t drink or smoke or eat a lot of junk food, and my vices are necessarily few and far between (they can really derail me). Sleep is the one luxury I have, I’ve realized, and since coming to that conclusion, it’s become easier for me to let it all go and get some rest.

As for my lists and reminders, they keep me organized. I’m so friggin’ organized (out of necessity) at work, that my calendar is a model for others. I spend a lot of time at work, moving dates around and trying to fit things together in a big-ass choreographed production. In fact, that’s probably the best way I can think about it — as an exercise in choreography.

Getting people dancing… moving together… and making a beautiful production out of it. It’s funny — watching dance irritates the crap out of me. Maybe it moves too fast for my brain, or it takes me too long to catch up with it. But I absolutely love still pictures of dancers in motion. The pictures of mastery in motion really inspire me — if they can do that (and how do they do that?!) then what isn’t possible for people to do?

Still pictures of dancers — especially black and white photos of modern dancers in motion — really inspire me. And my job as a project manager is to inspire people do to the equivalent in their own work, so that our projects come together in a unified performance.

And you know what’s interesting? In the process of accommodating my limitations, I’ve actually been able to extend what’s possible for me, above and beyond what I’ve done in the past. In some ways, losing my basic functionality at one level, forced me to learn to live at a completely different one.

If I hadn’t gotten hurt and gone downhill as badly as I had, would I have been forced to “bump it up” the way I have? I’m not sure. Other keys have definitely been getting the right information and also getting some support, but ultimately, it was the total unworkability of my past ways of doing things in my emerging life, that forced me to dig deeper and see what else was there.

Anyway, this post is going on way too long. The bottom line is, TBI trashed my life, but I have gotten to a point where it’s no longer a total wasteland without any hope for the future. I have a ton of hope now, and that’s for a good reason — because things are turning around in tangible, daily ways. I have something to show for all my work, and it’s good.

It’s really, really good.

Onward.

Tutorials for dealing with TBI

Dealing with TBI takes a team effort

Dealing with TBI can be hugely confusing and frustrating. There is so much information out there – some of it conflicting, some of it duplicated, a lot of it outdated (and never updated on the web, because people stop updating their web pages). So, finding useful information that cuts to the chase, that’s practical, and offers more than just a marketing promotion can be a challenge. Fortunately, there are such resources out there. Project LEARNet is one of them.

Project LEARNet, which is “A Resource for Teachers, Clinicians, Parents, and Students by the Brain Injury Association of New York State”, has some great tutorials on Common Issues for students after TBI. Don’t let the focus on kids / students deter you – these are great resources for anyone who is seeking to better understand TBI. Check out the tutorials here. They are downloadable PDFs that you can print and take with you – great stuff!

All Project LEARNet Tutorials
1. Assessment Issues
2. Cognitive/Academic Issues
3. Self-Regulation/Executive Function Issues
4. Behavioral Issues
5. Social/Emotional Issues
6. Family Issues
7. Physical/Medical Issues

It is so rare to find a concentration of truly helpful information in one place. Also very useful, for anyone seeking to better understand TBI, is their page on Problems Seen after TBI. You can read about them here and then follow the links for more information and specific tutorials. They cover many different bases on their “Problems Seen” pages – general medical possibilities, cognitive/self-regulatory, behavioral, and social/emotional possibilities for the source of the problems.

If you’ve got these issues – or you’re dealing with someone who does – this is a great place to start.

Again, don’t let the focus on kids/students dissuade you. This is good and useful information and it can be of great help to just about anyone trying to figure out WTF?! after TBI.

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.

Once you find something more

… more than your personal pain, more than your own problems, more than your difficulties and drawbacks and struggles… everything changes. Once you find something that is bigger than yourself, that means more than any problems you might have, that lasts longer than the next 24 hours… 24 days… 24 months… 24 years… Once you find something that lights you up and brings you out of your shell, a whole lot of… well, nothing-ness… can be put to rest.

See, the thing is – when we are so caught up in what is wrong with us, it takes our attention off the things that are right with us… the ways that we can help others who have their own issues which may be all but impossible for them to handle. When we are so caught up in managing our own issues, in dealing with our own pains, we don’t have the energy and the time to look around and see what else is there for us to do with ourselves. We spend so much time consumed with ourselves, that everything else fades into the background.

And our lives become that much smaller, that much darker, that much less live-ly.

I only say this, because I myself have fallen deep into this quagmire, and I have been stuck there for many, many years. I spent so much time in my childhood and my young adulthood, and then in my adult years, working hard to manage my issues and deal with life around me. I didn’t understand what was happening to me, I didn’t understand the nature of my issues, and everyone around me had their own problems that were keeping them from helping me see what was going on with me.

If anything, they were still dealing with their own problems they first encountered as children, and never fully managed to resolve or escape. I’m sure they were very bit like me, when they were young — needing help but never getting it, because the adults who could help them were too caught up in their own pain and problems to see beyond and see what was in front of them.

And so the cycle continued.

And so it continues to this day — and probably will, well into the future.

The thing of it is, it’s not really necessary to ONLY have this happen, generation after generation. I don’t imagine for a moment that we’re going to help everyone to resolve their issues overnight and usher in a new world of love and light and bliss by this time next year. I’m not saying it’s not eventually possible, but these things take time. And in the meantime, we need to take these little steps to help the situation — not only helping ourselves to get past what is dragging us down, but helping others to see that there might be something else possible that they could experience, besides the hurt and the pain and the anger and the fear.

I don’t want to get all “airy” here — what I’m talking about is actually really practical, really commonplace, and really everyday. It’s just this basic fact that things are hard all ’round, but we can make them a little easier by getting over ourselves. I do believe it’s important to take care of yourself, but sometimes “looking out for number one” gets us — and everyone around us — in trouble. Especially when the pains and the hurts we’re trying to make up for are actually invented in our own minds.

Take for example someone who lives their life around being rewarded for enduring difficulties in life. I know lots of people like this, and at times I count myself as one of them, so it’s an easy example for me to use. Say someone grew up in a family that had a lot of problems — for one reason or another, life was chaos. Growing up, there was a lot of pain and frustration, and certain habits got “grooved” into everyone’s thinking and behavior. Even after growing up, those old habits still stayed in place, because … well, you never know what might happen, and something really awful could come ’round the corner any minute. This person spends their adult life on edge, always looking for that THREAT that may or may not come, and by the end of each day, they feel completely exhausted — depleted by their constant need to be on alert.

Is their life really, truly dangerous? Maybe. Or maybe not. Perhaps they live in a very safe area, they have a good job, and all their needs are met — so much so, that they have a constant supply of luxury items available to them anytime, for the having. Still, because their mind is trained to look for danger, and they are accustomed to being on guard, they end each day in Paradise convinced that they’ve barely survived Real And Present Danger, so therefore, they should be rewarded.

Or at the end of each day, they are so exhausted by their hyper-vigilance, that they attack everyone around them for pulling on them and draining them and keeping them from relaxing after what seemed like an impossible day.

This is one example of how it can go… how we can lose ourselves in our old pain and suffering, because we’re in the habit of focusing on it, and we don’t realize we don’t have to do that anymore. Now, granted, sometimes the pain and suffering is very, very real. What I have gone through in my past, thanks to TBI, was not imaginary. I didn’t make it all up. It was difficult, almost impossible, and it did a lot of damage to me before I realized what was going on. At some point, though, I had to be willing and able to let go of the iron grip I had on my life, on my difficulties, on my challenges. I had to be willing and able to entertain the possibility that A) my own struggles were subsiding but my focus on them was making them worse than they had to be, and B) others were struggling even more than I — with far more serious issues — and for far more genuine reasons.

It took me some time to get to that point, and there were a lot of fits and stops along the way. I can’t say it even sank in for quite some time. But once it did… well, that was interesting. When this started to hit home to me, I felt lost, disconnected… as though I was losing a part of myself. I was, too — I was losing the part of myself that had hardened around my injuries like tough scar tissue that was holding me back from being able to completely move. My injuries were part of my past, they were part of who I was. And if I let them go, who would I be?

Who indeed?

Well, I struggled alone with that for quite some time, until it occurred to me that my injuries weren’t only about me. I’ve always been aware that others struggle with these same types of issues, and that reaching out to others to let them know they are not alone is an important part of my life’s work. Yet part of me has really clung to the idea that my life has been defined by injuries, that it’s held me back, that it’s cost me so much — me, me, me. All about me. Because, well, if it’s not about me, then won’t I disappear?

Yes and no. I now feel that letting go of the “me” that is defined by injury, is the one way I can actually make some sense of what I’ve experienced. It’s ironic — the very thing I hang onto is the thing I need to let go of. At the same time, once I let go of that “me”, I’m free to become something else – someone else – someone who knows what it’s like to really battle these issues, and who still has to work with them, day to day, but who isn’t going to be held back by them, and is going to use their experience to help others, in hopes that they themselves may find freedom one day.

I’m a big believer in freedom. I’m also a big believer in responsibility. And oddly, the very thing that seems to take all the “fun” out of freedom — responsibility — is the thing that makes it even more free.

Because there is something more out there, than the pains we suffer and the injuries we endure. We all — each and every one of us walking around on planet earth — has our own share of pain and suffering. You can’t live on this earth without at least some of that. What we choose to do with it… that’s up to us.

And once you find something more to put your attention on, that isn’t all about your own hurts, your own pains, your own dramas… well, you’d never believe what else is possible in your life.

 

What else…?

A new day is dawning – what else is possible?

Time has really gotten away from me, this morning. I was up early with my spouse – who was up late (really late) – and we got to talking, which is good. I have a doctor’s appointment in another hour and a half, and I need to get ready to go. And here I thought I had at least another hour. Funny, how the time flies when I go online.

Anyway, it’s 12/21/12 – the big day, according to a lot of folks. Some go on and on about the end of the world, but what I’ve heard from more folks is that it’s actually the beginning of the next one. A new world. A new start. Not right away – for what really changes in an instant, if it’s truly going to last? But starting now, moving gradually towards What’s Next.

Now, I am pretty much of an agnostic, when it comes to this sort of stuff. Maybe it’s true, maybe it’s not. Who the heck knows? But it is a way I like to think about things. And even if there’s nothing special about this day, other than it’s the marker of when the days start to get longer (and people Up North get closer to seeing some sunlight again), and that we have attached certain numbers to it, I can certainly choose to do with it what I like.

Just like I can every single day.

If I want numbers to inspire me, I can look at the clock — I can decide at 12:12 or 12:21, each and every day, to start fresh – hit the proverbial reset button. Or I can set my alarm for 3:33 each afternoon and treat that as a “reset”. Probably not a bad idea, since my daily clock seems to wind down around 12 noon each day, and then pick up each afternoon around 3:30 or so.

Numbers… Yeah, numbers. I have always played games with them, and I find them fascinating. When I’m driving long distances and I get tired, I play games with the numbered mile markers beside the highway, and that perks me up right away. Whatever does it for you to make your day a little more interesting, a little less stressed, a little more enjoyable… well, that’s alright by me.

And whatever it takes to get our heads out of a terrible space, is fine with me — provided it’s not killing brain cells or doing harm to others (which a lot of people find enjoyable, sadly). My argument about all the Doomsday stuff is that We Just Don’t Know. We can think we know, we can suppose to know, but doomsday-sayers have been in that business for as long as humans have walked the earth. And magically, we’re still here.

The only impact they seem to have is making us feel like crap, while we’re waiting for something that isn’t going to happen.

Now, I’m not going to get into a theological debate over this — I’m just saying that for all the people who have staked their reputations on THE END being just around the corner, how many of them do you remember? Few, if any. Because when they’re proven wrong, as they so often are, they just fade from view — and go back to their work doing whatever they were doing before. And all we’re left with is a bad taste in our mouths and a little more stress to drag us down.

So, on this momentous day, when certain people are celebrating the end of the old and the beginning of the new, I look to the day myself, and I wonder what else I can do that will improve my life and the lives of those around me. Whatever the date, whatever the occasion, it’s a good thing to do in any case. I think about the ways I can turn things around that I’m not happy about… including my doctor’s impression of me as a “risk taker” that I am very uncomfortable with. I shall be having a conversation with them in another couple of hours, and I’m writing it all down ahead of time, so I don’t lose my train of thought. I can turn things around at work by really focusing on what’s in front of me, not getting distracted, and doing a better job of following up. I can improve my experience overall, by improving the skills that make me feel like the person I really am with the capabilities I really have. And I can find other like-minded individuals who are seeking to make the same kinds of positive changes — both personally and on the larger social and cultural stage.

For some reason, this time really feels like a turning point for me. I feel pretty energized by the possibilities… and the thing that makes me feel even more energized, is hearing so many people talk about new beginnings, where a week or so ago, they were talking about drudgery and sadness and misfortune and all that. People are stepping up to take more responsibility for their lives and their situations, and that’s really exciting for me. Because I’ve always known it was possible — and now with this “new era” dawning, more people are starting to agree with me.

I guess that’s the thing that excites me the most about this Winter Solstice — that other people are realizing the same thing I’ve know for many, many years: that anything is possible, if we put our minds and hearts to it, and we don’t accept the same-old-same-old as a given.

Truly, it is a new day. And I’m so happy others are seeing it, too. :)

A strangely vulnerable place

What does the shadow know?

I recently was pointed to an excellent blog post by someone who writes about disability. Her post No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters really struck a nerve with me. She basically took to task the author of a blog post that went viral, recounting personal struggles with a challenged kid and what she felt she was forced to do. She seemed to truly believe that her kid might one day turn into a shooter like the one who massacred all those little kids and teachers in the Newtown, CT elementary school.

When I read the words of that mother who blogged about her troubled son and publicly “outed” him in ways that can — and will — follow him the rest of his life, frankly it was eerie. And like the author of No, You Are Not Adam Lanza’s Mother, it really bothered me, hearing a mother tell the world about her usually brilliant, sometimes violent son. To all appearances she was calling out for help. I got that. But I also had to wonder – what about her son? And not only now, but what about later?

Certainly, it must be horribly, terribly difficult for any parent to struggle so much with a kid like that. I feel a great deal of compassion for her. At the same time, I also cannot help but think of my own mother, who spent much of my childhood reaching out for support and help from her friends, by telling them what a difficult time she was having with me and one of my other siblings, who was also a “problem child”. I can remember quite vividly the winter vacation we took with the family next door, when I was 12 or so, and I overheard my mother complaining with great anguish about me and my anger. She could not understand why I was so bitter, so angry, so uncontrolled. I’ll never forget the tone of her voice, the disgust, the helplessness, the blame — as though my anger, regardless of the cause, was an insult to her.

I was making her look bad.

After all, my other siblings were so good — except, of course, for the other problem child who ended up addicted to heavy duty drugs, dropped out of high school in 9th grade, and was in and out of trouble with the cops for years. If only we could all be like the other three who were such good kids, such diligent students, so responsible for their age. If it weren’t for the two of us, everything would have been just right — no criticisms from grandparents, no condemning stares from strangers, no tsk-tsk-tsk from the “church family”. Just a nice all-American family growing up together in a happy little unit.

But of course, there was me… the kid who’d gotten hit in the head a bunch of times (not that anyone put two and two together and understand that was why I was so angry, so quick to act out, so impulsive, so unable to keep focused on anything for long). I was a problem. An embarrassment. A puzzle that could never be solved. I was the wedge between my family and perfection, the barrier between my mother and her happiness. My dad spent a lot of time traveling for his work, when I was a teenager, so he got out of dealing with us, most of the time. So, mom was left to deal with me and The Other One. We were her cross to bear. Especially me — at that point in time — age 12-13, when I seemed irreversibly at odds with everything in the world, including myself, and nothing could calm or soothe me except solitude and the company of my own imagination.

And I wonder about that kid who got basted in that blog post. I wonder how he must feel — how he’s going to feel. The sound of my mother’s dismissing, disparaging, judging, disgusted voice in that cabin in the woods, some 35 years ago, stays with me to this day, and it did a number on my head for years after I first overheard it. I cannot even imagine how that kid must feel, having his issues broadcast all over the world wide web, for all to see and read and think they know about.

Truly, it must suck.

What also sucks, is imagining what it means for the kid long-term. He’s been committed, and his mother has publicly said he’s a threat. What are the chances now, do you think, of him ever being admitted to a public school, or for that matter a college? What school would want him? What college — especially considering the episodes at Virginia Tech — will welcome him with open arms, with a record he’s already started at 13? It probably makes no difference if they sort out his meds. It probably makes no difference if his chemistry rights itself with his advancing years. And it certainly makes no difference, if he learns coping mechanisms and behavioral strategies that help him keep centered and grounded in the midst of any storm.

The damage is done. His face and his name are out in the open for all to see. He’s well and truly screwed.

But hey, at least his mom feels better, right?

What a strange feeling this is. I can only be thankful that my mother had no access to the blogosphere when I was a kid. If she had, she would have been all over it, broadcasting her woes and my ills to the world on every forum and blog and social media outlet she could get to. She did that sort of thing — old-school — as much as she could, with both me and my other problem sibling, with whomever she could, so long as they were willing to listen.

To this day, she hasn’t let go of the pain and humiliation and hurt which my ex-addict sibling brought to her and her otherwise perfect family. She continues to punish them with judgments and criticism and public humiliation, even decades after they had their last high. And she continues to treat me like I’m somehow deficient — to this day she still jumps a little whenever I make a sudden move, as though I’m still as unpredictable and volatile as I was when I was younger. It makes no difference that both of us kids have paid our dues and gotten our lives in order. It makes no difference that we are different. For her, we are just the same.

She remembers. She remembers what we did to her and her chance at perfection. And we will never live it down.

That recollection of what it’s like to have your mother broadcast your illness for her own sake… it’s only half the actual struggle with all this I’m having right now. The other half is with privacy, and the freedom to be anonymously imperfect in this increasingly invasive world. There’s a reason I don’t tell people who I am and where I live. There’s a reason that no one I know is aware that I keep this blog going. Because people just don’t get it. Unless you’ve been in this kind of situation, where your brain and your body and much of your life are all seemingly pitted against your will and best intentions, you cannot know how it is. But you can sure as hell judge. You can sure as hell condemn. And you can sure as hell make certain that your views are known — whether it be on Twitter, Facebook, blog comments, or some other online social medium. There’s just too much talk and not enough knowledge, too much criticism and not enough compassion.

And that is a battle I choose not to take on. Because it’s a losing one. A long and losing one, at that.

Now, being curious to see if there was any kind of response/backlash against the blogger who took issue with Pseudo-Adam Lanza’s mother, I checked back today. Sure enough, she got a ton of comments, apparently a lot of them were not that great. She followed up with a great post: Debriefing: On the Ethics and Implications of Outing a Child in the Media and she touched on many of the things I was thinking, myself. I hope you’ll read her piece – she says it all quite well.

In the end, like many people after the Sandy Hook Elementary massacre, I’m feeling quite raw and vulnerable, these days. But even moreso, as someone with a history of cognitive issues and anger issues and attentional issues that could easily be amplified and skewed by the scapegoating mob who are seeking to root out “bad influences” and “threats” from polite society. Behind every rock, there seems to lurk a demon. People are looking high and low, and you generally find what you look for. It’s truly bizarre, to feel that after so many years of working so hard to gain some semblance of normalcy, I should experience this sense of intense vulnerability — not as a victim, but as someone who might be targeted by the status quo, because of my past. Especially my childhood.

And it makes me reluctant to actually speak my mind and talk about what’s really going on “ïn here”. Someone might take it the wrong way, after all. And then what?

I know I’m indulging in some pretty far-ranging what-if’s… and yet…

Are people with mental illness going to be targeted by an uninformed and aching public? It’s quite possible.

Are people who have different cognitive capacities going to be singled out and marginalized by a world seeking desperately for ways to return to normalcy — a normalcy which never actually existed and we frankly will never “get back”? It wouldn’t surprise me if that happened.

Are people with known anger issues, who struggle with impulse control, who honestly and sincerely work towards keeping to stable ground and staying centered in the midst of chaos going to be seen as potential threats to those around them? I wouldn’t doubt it.

In the extremes, of course we have to be careful. We have to be wise and prudent and use our heads and not let the batshit crazy people loose their rage on the rest of us with tools of mass destruction. But there’s a whole lot of different kinds of crazy swirling around in many, many guises, and I for one wouldn’t care to be labelled by the maddening crowd and possibly targeted by those who “mean well” and are trying to protect their loved ones from threats they imagine are there.

Nor would I want my ills to be dragged out into the light of day without my consent or say-so, and marked as “a future Adam Lanza” — just because my mother needed to feel that she wasn’t quite so alone.

The hurt of the hidden wound

Got a tip about this article today. Good reading – check it out.

It was July 4, 2009 when Lieutenant Colonel Stewart Hill had his independence taken away from him. But he doesn’t remember much of what happened on that hot, dusty Saturday, and has no recollection at all of the moment the lights went out on his former life for ever.

His last memory was of a Chinook helicopter rising from a ploughed Afghan field. It carried the lifeless body of 18-year-old Private Robert Laws and other injured men of the Light Dragoons and 2 Mercian, victims of an attack with rocket-propelled grenades by the Taliban. After that, the gaps have to be filled in by others.

Read the rest here >>

The best Christmas present ever…

… would be staying home. The drive through multiple states just seems more and more daunting. Both my spouse and I are sick and not getting better as quickly as we wanted, and we actually have a lot to do between now and when we are planning to leave – very little of which looks likely to get done.

I hate to say it, but not having to deal with family and pressure and all the activity would be pretty awesome. AND it would give me some quiet, uninterrupted time to focus on things I want to do — repairs around the house, studying my techie stuff, and catching up on my sleep.

At some point, I need to actually take time for myself, doing the things I want to do, at the pace I want to do them. All of my time “off” this year has involved doing things with a lot of other people and not having a whole lot of downtime. For me, that is a killer. My spouse loves to have lots of people around, most of the time, so we’d done what they wanted to do for the long vacation times. And the week I had away, traveling, was very busy with work.

This is the time of year when I like to step back, re-examine my life, and think about the direction I want to go — catch up on writing some things I’ve been meaning to talk about, and research some more things that piqued my interest along the way. It’s a time of slowing down, literally, as the days get shorter and shorter, then a little bit longer — and yet all around us, we’re being told/forced to SPEED UP!!!!

Madness.

Well, this year it’s probably going to stop. The relatives we haven’t seen in a year will be disappointed, I’m sure, but it makes more sense for us to travel to them in good weather, in any case.

Tired, tired, sick and tired. The best Christmas present of all would be to opt out of it all, just kick back, and be….

And so it shall (probably) be.

Holiday Party TBI Hell – Glad that’s over

It’s not all cheery sh*t

I just got up from my nap, a couple of hours ago. I lay down about 1:30 and woke up at 5:30 or so. Four hours… sweet. I really needed that nap. I have been feeling really off for the past several days, and going to that Christmas party for work last night was no picnic.

For the record, I friggin’ *hate* Christmas parties. Holiday parties. Whatever. They seem like an exercise in vacuousness… you stand around and interact with people you work with, just for the sake of interacting… I don’t get it. The only reason I have anything to do with the people I work with, is because I work with them. It’s structured. We all have a reason for being there. We collaborate and we coordinate and we reach goals together. But socially? I would probably have nothing to do with any of these people, and they’d probably not know what to do with me, anyway. Seriously, the only reason I have any contact with these folks — like my family — is because we are connected by something larger than ourselves.

Oh my God, parties bore the living crap out of me. Especially big ones where everyone is milling around “having a grand time”. Not only are people drinking, which slows them down and turns them into the equivalent of walking mossy stumps, but the things these stumps choose to “discuss” bores the crap out of me. There’s nothing to it. Nothing. Nada. Zilch. They just talk for the sake of talking, to get a certain reaction out of others. To be witty. To be clever and whatnot. That’s nice for bonding, in a way, but the primary bond I feel with these folks has to do with getting stuff done. It doesn’t involve socializing. Not voluntarily, anyway.

Socializing “for fun”? How tiring. Seriously.

Bah humbug. Or is it really that? When I think about it, it’s not that I lack holiday cheer — I feel quite grateful and, well, stable, this holiday season. I am on good terms with my family, I don’t dread having anything to do with them, and despite having no money for presents at Christmas, I’m going to think of something. I’ll manage.

The thing that gets me, is how hard it is for me to be in large groups of people in large spaces with unstructured interaction. The company party last night was in a very large venue with lots of visual stimuli. There was a lot to see and do, and there were hundreds and hundreds of people, most of whom I did not know — and I didn’t care to hear their conversations, if truth be told. It was loud — so many people drinking and talking… a rock band playing… the sounds of silverware on plates and glasses clinking and voices getting louder and louder as the evening progressed… I tried to block it out, but I couldn’t. It was all too much.

I got there a little late, which was fine. My spouse had to work that night, so I was flying solo. I found my team… and then found that I just couldn’t hang with them. They were in the center of the big hall, milling around with tens of other people, talking about this and that — nothing, really — and I was starting to feel sick. I hadn’t been feeling well all day, as it was, and my middle ear was totally screwed up with fluid from an upper respiratory infection that went for my ears — as it often does. Nothing like wading into a huge hall of loud people, feeling like you’re falling over, to put a damper on the evening.

So, I ditched my team and caught up with another coworker (who I consider a friend) who had come with another friend of theirs, and we ducked out to get some food and just hang out for a bit. That was okay. But again, the whole social scene… all the things to see and do and take in… for me, it was nothing short of torture. And on top of it, I was wearing a suit, so it was uncomfortable and formal, and I had to keep checking to make sure I wasn’t coming apart in places, as I sometimes do. Nothing like having things unzipped or otherwise disheveled to put a damper on the evening.

The three of us ended up going to some of the different special events that were organized for the evening, and then I caught up with my team at the end. We took a group picture together, stood around talking a bit, then we all headed home. They said they missed me at supper — they all ate together, while I was off with those other friends. I felt bad that I missed them, but at the same time, they love to mix and mingle, and I was feeling so off balance, so “off” in general, that I would have been no fun at all, most likely.

Had I mentioned that I hate big, loud parties?

Anyway, I got home much later than I wanted to, and I went straight to bed. I got maybe 7-1/2 hours of sleep, and when I woke up, I felt like crap. I took care of my errands and did the things I needed to do. Then I lay down for my nap, and 4 hours later, things were looking up. I’ve been drinking a special ginger-honey tea I discovered, so I’m feeling a lot better, but I’m feeling pretty down on myself for not being better able to handle it all, last night. I was actually looking forward to the evening, but when I got there, I realized it was probably a big mistake for me to go, in the first place. I could have begged off, saying I was sick, which was true. But I really wanted to go.

Oh well, at least I went. That’s something. I managed to navigate the evening without awful incident, despite feeling so dizzy and lightheaded and off. I didn’t melt down, in the aftermath. And I didn’t do anything stupid like overstay my welcome and/or say or do anything really dense and regrettable, as I have in other social situations. I kept pretty cool, all things considered, and even though it was awkward and painful for me, and I just didn’t feel right at all, I got a lot of free food out of it, and I managed to complete the evening “successfully” — as in, no fights, no humiliation, no things said and done that can’t be taken back. So, that’s something.

Plus, I got my “inoculation” against later holiday party impulses — next time somebody wants me to come out and party, I’ll be better able to remember why that might not be such a great idea to spend an evening like that. Next time, if my spouse can come, I may go — because they are much more social than I am, and they help to keep me oriented. Then again, I may not. Because both of us actually friggin’ hate company parties, even if they do a much better job of interacting than I do.

I’ve never been a big fan of large groups of people. I’ve always been that way. But throw in the sensory issues that have really exacerbated since my TBI in 2004 — loud noises and bright lights bother me to no end when I am tired, and last night I was tired — along with being even more easily fatigued by all the stimuli and interaction… along with vestibular trouble… and it makes for a really tough time.

I just have to remember that, the next time someone invites me to a big party and I hear myself saying, “Why yes, I’d love to!”

The best part of the party last night, was driving home. Even if I was practically falling over in my seat and I felt like crap and I was afraid I’d fall asleep at the wheel, it was still such a relief to be getting OUT of there. That got me home. And it felt great to be alone in the car as I drove.

That’s something.

New week just around the corner. We’ll see what happens.

Overcoming overstimulation

Lots going on...

I’ve got a big trip coming up next weekend — I’m taking nearly a week to go see family in several states… kind of a follow-up trip to make up for not having been there for the holidays (I was sick and couldn’t travel). There will be lots of driving, lots of activity, lots of interacting with relatives I haven’t seen in many years. There will be a family reunion with relatives, some of whom care about me, others of whom couldn’t care less about me. There will be time with siblings as well as aunts and uncles and cousins. All together in one big melting pot for the weekend.

This is coming on top of some very busy times at work. I’m a bit apprehensive, because I’ve been tired and I’ve had trouble sleeping, and I am concerned that it might affect my ability to deal with my family. I also worry that it will affect my ability to deal with my spouse, who is not a big fan of most of my family. We come from very different backgrounds, and my spouse is not always the most open-minded individual when it comes to differences.

I know I shouldn’t stress over this, but I am a little bit. I have to get a bunch of things done for work before I go — it’s really BAD timing, but there it is. My workload is just crazy, these days, and it will be until mid-September. Then it will probably pick up again through the end of the year. It’s hard to believe July is almost over. August is so packed, it might as well not even exist. Just busy, busy, busy all around.

But it’s a good thing. It beats the alternative. I’ve become a key contributor on some important initiatives, so that keeps me going and it gives me a sense of belonging to something bigger than myself. And I have to keep that in mind. It’s another way of looking at it — it’s a good thing, that going away for a few days is a problem. Because if it weren’t I’d be in trouble.

Likewise, if I think about the upcoming trip with my relatives, one of the reasons it promises to be so full, is that so many people want to see me. They want to talk to me, to find out how I’m doing, to tell me about their lives. They want to share a lot with me, and they don’t realize how overwhelming it can be for me. Over-stimulation has resulted in me going temporarily deaf and blind — I was with extended family members who were very high-strung, and there was so much going on, my system just shut down, and for a short time (maybe 10-15 seconds), I couldn’t see or hear anything. Everything just went silent and black. I came back (of course) and felt dazed and confused. I suspected it might have been some sort of seizure, but then I got checked out, and everything seemed to be fine, actually. So, it was probably just the overwhelm.

Thinking back on that day, which was about six months before I figured out the TBI connections to the difficulties I’ve had in my life, I can think of a number of things that made it more difficult, overstimulating and overwhelming:

  1. I was extremely anxious about a lot of things — if I was wearing the right sorts of clothing (people around me were much better dressed than I, and I felt self-conscious in my jeans and t-shirt).
  2. I was pretty brittle and inflexible in my expectations for the day — I wasn’t going with the flow, and when the group kept changing plans, I got increasingly uptight.
  3. I wasn’t eating properly — I wasn’t eating the same sorts of foods I normally did.
  4. I wasn’t resting enough — I had been pushing myself to go-go-go, the whole time, and I was very fatigued.
  5. I wasn’t exercising enough — I wasn’t exercising at all, actually. I hadn’t been taking the walks I needed, and I hadn’t been working out regularly the way I have been over the past couple of years.
  6. I wasn’t wearing my sunglasses — Big problem on that very sunny day. The brightness only exacerbated everything else, adding to my anxiety and stress.
  7. I wasn’t in command of my thoughts and my reactions — I was being pushed and pulled in a million different directions, and I wasn’t driving the car of my own mind. I was letting everyone else decide for me how to think, how to talk, how to behave. I was trying to fit in and do the right thing so I wouldn’t be as conspicuous (and embarrassing) to my extended family/in-laws. The result was that I stood out even more, I was less able to participate, and I lost it (literally) for a short while that day.

Looking back, I can see how I’ve really come a long way in the past 4 years. I’m nowhere near where I used to be, and I have to remember this as I prepare for this next trip. My anxiety levels have decreased dramatically since I started exercising on a daily basis. And my whole world view has changed as a result. My neuropsych has been a huge help, keeping me honest and realistic — in a good way. They don’t let me get away with the old “stories” about how debilitated I am by my TBIs. They don’t let me easily jump to conclusions about being incapable and incompetent, just because I happen to be human. And they don’t let me make excuses about poor choices I’ve made and things I’ve done. They don’t beat me up over it, but they also don’t let me write myself off with some easy excuse about being impaired.

And that’s quite a feat to accomplish. Because I have a lifetime of experience of reaching the “logical” conclusion that there is something wrong with me, and I am less capable than I actually am. I’ve had plenty of people telling me there was something wrong with me. I’ve had plenty of people “protecting” me from myself. I’ve had plenty of people ditching me or taking me off tasks when I didn’t perform as expected.

It was all a crock, but when you hear it often enough and everyone seems to agree, it starts to sound like the truth.

But it’s not. It’s the farthest thing from the truth.

The real truth is that I have the tools and the experience and the proper mindset to approach this coming weekend in a stable, productive frame of mind. I’ve managed equally — if not more — challenging situations quite well, and I’ve come away a better person as a result.

I know from experience that I don’t have to bury myself in work in advance, trying to keep my mind off things. I don’t have to run away from it, drive myself with all sorts of stress that takes my attention off my anxiety. I can rest and relax and also get good exercise in advance. Eat well and take care of myself, and remember that I’m going to meet and greet people who actually love and care for me, even if they don’t always agree with how I live my life and vote.

That might actually be the hardest thing to handle — that anyone could actually love and care for me. That all my injuries and my issues and my supposed shortcomings might not matter nearly as much as I think they do. It could just be that I have a great time when I go on this trip. It could just be that the only over-stimulation is actually in my mind. And that if I can tame that, all the rest will come naturally to me.

It could be…