Discovering a new identity after brain injury – or creating one? – Part II

I decide who I am

I had to run out the door to work this morning, before I could “finish my thoughts” on Discovering a new identity after brain injury – or creating one?, so now I’ll continue…

So, after my fall in 2004, something happened to my old sense of being able to reinvent myself at will. I lost my flexibility. I lost my fluidity. I lost my “old” Self — the Self who knew there was more to me than I knew at the present time.

That change didn’t happen immediately. It was a gradual process… a slow erosion of who I was and who I knew myself to be… as I had one instance after another of feeling and thinking and behaving not only different from how I wanted to feel and think and behave, but how I intended and expected my Self to be.  Listening to myself fly off the handle over little things… Watching myself get so belligerent and argumentative over stuff that never used to bother me… Seeing my whole way of relating to others fall apart — getting all jumpy and antsy and aggressive — and never being able to really predict how I would be, on any given day…

One experience after another happened, to make me doubt and question who I was, and take me farther and farther from my Self. Some people turn to religion or spirituality to find their way back themselves again. For me, any religious or spiritual feeling was gone, baby, gone. I had always felt a close connection to God, Spirit, Creator, Higher Power (whatever you may call it), but after my fall in 2004, I just couldn’t be bothered. People around me would want to pray and meditate, and all I could do, was roll my eyes and get irritated.

That all takes a toll. Especially when your behavior is nothing like what you want it to be. And how I was, did not resemble me in the least. I found myself doing and saying things I regretted even before I started — but I was helpless to stop it. The worst part was, I didn’t feel comfortable talking to anyone about it, because it was so terribly painful for me, and I would start to cry, when I thought or talked about it. I was deeply, deeply ashamed of my behavior. I knew better. Why couldn’t I do better?

I just pulled away from people, over several years after my fall in 2004. Only after I started regularly seeing a neuropsychologist in 2008, did things start to turn around. They got me reoriented in the right direction, and after a few years, I started to be responsible again. I got my act together, bit by bit, and things really improved for me, all across the board.

But there was still a missing piece of it all, a missing part of me that made me feel like a stranger in my own skin — uncomfortable with myself, not feeling like I recognized myself. I tried discussing it with my neuropsych, but they didn’t seem to realize the dept of my distress — maybe because I kept it wrapped so tightly under this veneer of capability, that they never could have known how wrecked I felt inside.

In any case, they never directly addressed my dissolving sense of Self with me. They were more focused on how I perceived myself in relation to myself and to others. Maybe they knew all the time that I had to reconstruct a sense of who I was, in order to fully recover. Or maybe they just didn’t seem to think my identity crisis was that big of a deal.

In any case, the net result of it all, was that I ended up spending a whole lot of time coming up with ways that I could make sense of my own life in my own way. Keeping this blog has been a big piece of it, as well as finding new things that got me interested in my life again — things that I felt were brand new discoveries. Even if I had “discovered” them before (sometimes several times), the fact that they felt new to me, kept me going. It kept me curious. It kept me looking and searching. It kept me engaged in my life.

And it gave me the feeling that I wasn’t just rediscovering my old self, but I was actively creating a new one. As I reduced the stress in my life, I found myself able to enjoy things again. I didn’t worry about whether those things “mattered” or not — or whether I was really fully appreciating what they were about. I didn’t care if I didn’t follow everything in the scientific papers I was reading. That wasn’t the point. The point was about reading something that intrigued me — even if I didn’t actually understand 100% what was being discussed.

I also found myself able to learn new things, albeit slowly. I taught myself to juggle, and that gave me a huge confidence boost. I figured, if other people could learn it, why not me?

I got involved in different projects and different undertakings, and I even did a live presentation that was broadcast to a special interest group. I never went back to the group after that. The point was that I did my presentation to begin with. I made art. I took photos. I did volunteer work. I created picture books and animations about topics that intrigued me. Just for the sake of doing it.

And all along, when I felt like I was in uncharted waters or things were unfamiliar to me, I treated it all like a learning experience. A series of teachable moments. A time to not only discover parts of myself I had never noticed before, but to create a new understanding of myself that was bigger than the rigid ideas I had about who I was and what was possible for me and my life.

At some point, I realized that the more time I spent trying to recreate the lost parts of myself from before, the less time I was spending on creating new experiences and discovering new parts of myself. And I also realized that the more I focused on the new and interesting developments in my life, the less I was bothered by the troublesome new parts.

When I was totally focused on something fascinating in front of me, the light and sound sensitivities didn’t make me nuts. When I was caught up in doing something that mesmerized me, it brought my brain to life, and I felt like I could think again. When I was actively learning new things, I had a sense of hope that drowned out all the bad feelings from meltdowns and blowups that really wrecked my peace of mind.

I didn’t just want to restore what I’d lost — like filling up divots in a golf course. I wanted to go explore a whole new part of the countryside, far away from those mucked up 18 holes.

In a very real way, my restored Sense of Self is a result of things I did to recreate it — to have a new and bigger understanding of myself in the context of my life. Over the years, I’ve developed some really helpful techniques to help me just stay chill and calm, so I can pay attention to the things that really matter in my life — the things that I can control and manage. I find that as long as I take care of myself and I keep showing up, my recovery progresses. There are always set-backs, but eventually things come together, and I’m stronger than before. And I find new ways to redefine myself and my place in the world.

So, I’m going to stop writing now and go read some more works about identity after TBI. It turns out, there’s a ton of stuff that’s been written, and some of it is very good. I find people talking about people “rediscovering” their identity after TBI, regaining a sense of who they are, and so forth. For me, creating a bigger and more durable identity is so important — it’s not just about discovery, it’s about actively taking a role in re-making yourself in the ways you choose.

I’ve always done this. That’s what I need to remember. Ever since I was a little kid, and I got moved around a lot, shuffled from one school to the next, from one peer group to the next. I’ve always had to adjust and redefine myself. And adapting after TBI is no exception to that rule. The stakes are higher now, and I have no real safety net, so it’s even more important that I take responsibility for my Sense Of Self.

I hope what I’ve learned can help others, as well.

We’ll see…

 

Discovering a new identity after brain injury – or creating one?

Works for me.

So, I’m working on my book TBI S.O.S. – an expansion of my site section TBI SoS – Restoring a Sense of Self after Traumatic Brain Injury, and I’m doing a lot of reading about sense of self, identity after brain injury, and what it means to be “yourself”. There’s a ton of interesting material out there, much of it from experts and researchers, who either know, work with, or interview(ed) brain injury survivors.

It’s been about a couple of weeks, since I started working on the book in my spare time, and I feel like I’ve made some really great progress. It’s truly a burning question with me – one that cuts to the very core of who I am and how I see myself in the world. It’s also at the center of many other people’s lives, as TBI or ABI completely reconstructs the way they think, move, talk, experience the world, and express themselves… and subsequently affects how they experience themselves.

Usually, when I think of people “losing” their identity to traumatic brain injury, I think that it needs to be someone who’s lost key and critical pieces of their abilities — moderate or severe brain injury survivors only. But in my own experience with all those mild TBIs, I got completely lost and feel like I had been cut loos from any semblance of reality for years and years.

It didn’t take a catastrophic injury to cause a catastrophic outcome. And I think maybe that’s one of the things that throws people off with TBI — if you “look fine” and people can’t detect a difference to you just from looking at you and interacting with you on a superficial level, then you must be okay. Nothing going on here, folks.

Right?

Wrong.

And then we get left out in the cold, cut off from everything — including ourselves.

Especially with brain injury. TBI, stroke, aneurism, infection… anything that screws up the brain can do it to you. We TBI survivors don’t have the market cornered on losing our identity.

But for the purposes of this book, I can only speak about my own personal perspective, which is all about mild TBI.

I think mild TBI is in some way a “different animal” than other types of brain injury, precisely because it appears so “mild” and it’s so hard to detect and track. But the impact can be hugely disruptive. And getting back to some sense of who you are — who you ARE, and can be — doesn’t seem to be very well mapped.

My hope is that this book will serve as a sort of road map for others — or at the very least spark some ideas about what they could do, themselves, to get back on track. In my case, after years and years of not having a clear sense of who I am and what I’m about — feeling like I was losing myself slowly but surely, and having no sense of who I WAS anymore — that’s changed dramatically. I feel like my “old self” again, in many respects (others I’m still working on), and I know how that happened.

I did specific things for myself and in my life that made this possible. A number of things I did were related to what my neuropsych was discussing with me each week. And a number of the things went directly against what my neuropsych encouraged me to explore and consider. I also threw some things in the mix that they never thought of — or that they specifically told me not to do. Some of it, they said, was too simplistic, and didn’t reflect my actual functioning abilities. I did those simple things anyway. Even my neuropsych could apparently not see the extent to which I was struggling and how much it was all affecting me, so I had to do some super simple things for myself that gave me tremendous relief.

I sorta kinda took my recovery into my own hands, and I used everything I learned — including some key concepts from the  Give Back Orlando TBI Self-Therapy Guide – to get myself back on track.

And this morning, right here and now, sitting at my desk, typing on my laptop which keeps stalling because it’s old and needs to be serviced, I’m really feeling familiar to myself.

Again. More than I have in many, many years.

After so many years of feeling like a stranger in my own skin, feeling like someone else had “moved in” to my head and body and heart… it’s good to be back.

In the course of looking at the past 10 years of my life, after my last TBI, and beyond into my past before that (as I sustained a number of mild TBIs / concussions over the course of my childhood and adulthood), I have to say that the thing that’s saved my butt, over and over again, has been actively recreating myself — not getting stuck in a rigid version of who I was, or was supposed to be, and really actively seeking out new sides of myself to develop. Out of curiosity. Out of a sense of adventure. Out of a need to explore. And not wanting to be boxed in.

I’ve always been pretty fluid in my life. I had to be, because so much changed around me, all the time. From kindergarten till 8th grade, I was never in the exact same class situation from one year to the next. Every year it was a different group of kids, a different school. And I moved a fair amount. I got in trouble with the law and other bad situations, here and there, and I had to relocate to make a fresh start. I’ve changed jobs and careers several times. And in the meantime, I got hit on the head, which changed my perspective dramatically.

Through it all, I didn’t lock myself into a single identity. Not really. I mean, it’s not like I was a chameleon who didn’t know who “I” was. Rather, I always knew there was more about me to develop and discover. And that saved me, time and time again.

After my fall in 2004, though, something happened. I lost that flexibility. I lost my fluidity. I lost myself. It didn’t happen immediately. It was a gradual process… a slow erosion of who I was and who I knew myself to be. One experience after another happened, to make me doubt and question who I was, and get farther and farther from myself. Some people turn to religion or spirituality to find their way back themselves again. For me, any religious or spiritual feeling was gone, baby, gone.

Well, anyway, so it goes. I just looked at the clock, and I’m running late.

More later…

>> Keep reading…

 

The things I CAN control

I can choose how to handle all this

So, they’re moving us to a new space, and similar to how it was at the last place I left (and hated working at), they do NOT allow us to adjust our workspaces, such as raising and lowering the desk height.

A number of my colleagues work standing up, for health reasons and personal preference. Now they have to get a doctor’s note that’s verified by the company nurse, in order to have their workspace adjusted.

Sounds like a sign of things to come… and I’m not liking it much. We’ll see how it is when I get there, but the lustre is starting to face from this job, for sure. Honeymoon’s over. And I’m getting that itchy feeling again. Looking around at job boards to see what else is out there… which is dangerous, because it gets me thinking in terms I used to think in, that I really don’t want to, anymore. My old job that I used to do, made me so much more money than I’m making now. It’s kind of depressing — I wish I could go back, but my life has apparently moved on.

So, I’m going to focus on my own thing, and start networking about getting my own project(s) off the ground. I actually connected with some good people at my current job who can help me get another big project I want to pursue off the ground. I’ve been holding off, because I haven’t had the time and energy to really pursue it. But now with my commute changing to 12 minutes (!) I will have more time and energy to focus on other things.

And it’s actually good that they’re screwing with us at work. Because frankly I don’t want to get too hooked into that world and find myself back in a situation where my life is not my own, they’re eating up all my time and attention, and I have nothing left for myself.

So, it’s fine.

I need to focus on what I can control, not what I can’t. And I need to stay focused, not get pulled off in a million different directions — that’s anxiety-producing and very counter-productive.

I’ve been there before. Don’t want to go there again.

The really good news today, is that I got a full night’s sleep last night. I went to bed before 10:00, which was heaven. Oh. My. Heavens. It was pretty freaking awesome. Just to get up and walk away from the television, to get myself in bed, turn out the light, and just sink into sleep. Amazing. I was so done yesterday — so very, very done. I have massive issues with fatigue, and by the time each day is done, I’m done, too. I think this is going to turn around, in the near future. Not only is my commute shorter, but it’s not on the freeway, so I don’t have to deal with speed as well as traffic. And I know all the back roads home.  So there.

Anyway, it’s all good. So, onward.

Staying ahead of the game

Gotta stay sharp… get a jump on the day

Learning lessons as I go… it’s no good for me to start early-early at work, where there are people around who want to talk about this, that, and the other thing. It’s better if I start my workday at home, and prepare for the day here. If I have to make early morning calls with people, it’s best that I do it from home, rather than the office. That way I’m not distracted, and I can think.

It’s hard to think at the office.

And that really threw me off on Monday, which made it a terrible day I had to recover from. I also had a blowup with my spouse on Monday night, which could have turned out badly. When I’m in a bad space, they love to goad me and push me and keep firing questions at me and demand that I pay attention to them. It’s like they can sense when I’m vulnerable and struggling, and they want to see how far they can stretch me. They just push and push and push, needling and goading and provoking me, because something in them just craves that intensity at the end of the day.

It wakes them up. It’s familiar to them, because of their childhood family history. No evening is complete without a heated argument, when they’re feeling dull and out of it. I know they love the fight for the fight’s sake, because the minute I stop dealing with them and just walk away, they stop what they’re doing. They stop the provocation, they stop the needling, they stop the questions, the pushing, the prodding. And they start bargaining to get me to come back and sit down, have some nice dinner, etc.

It’s almost like my spouse is not even there, when that happens. Something in their brain switches on, and the person they are switches off. It’s become worse, in the past years, and now (thanks to help I’m getting from a counselor and my neuropsych), I can see it for what it is — just some weird-ass neurochemical/biological impulse they have to FIGHT. If I step away or just stop the progression, it’s like magic. They turn into someone completely different.

It really does a number on me. In the aftermath of my meltdowns, my spouse is so calm. They almost seem like they just had a cigarette or a beer — they’re very relaxed. Meanwhile, I’m a friggin’ mess, I feel like crap, and I have to build back my self-confidence again. They get the upper hand. They get to recreate the dynamics of the past. And the old cycle is in place. I don’t even think they realize what they’re doing, so it’s up to me to stop it, myself.

And I stopped myself on Monday night before I got too bent out of shape. I could tell I was getting to the point where I wanted to throw something or hit something (or someone). So, I backed off. I just slammed on the brakes and walked away from the situation. When I walk away, my spouse starts to behave properly again.

So, I’ll have to start doing that, anytime I feel that “rise” starting to come up with me. I’m just walking away to let them calm down and stop provoking me.

Yesterday was better. I took my early calls at home, I got into the office after rush hour traffic, and I had a pretty productive day. It was like pulling teeth at the end of the day, but I got things done, exhaustion and all.

One thing that’s throwing me off is a new coworker who has really been annoying the crap out of me. I’m supposed to be their “buddy” and train them and bring them along in the organization, and they’re not making my job any easier. This individual has a ton of qualifications, certifications, and degrees. They were a teacher in the past, and they like to show off how much they know about ancient history and roleplaying games. They also like to get into a lot of heady discussions about intellectual things, but they don’t have a ton of depth, and some of the things I know a lot about, they’ve never even heard of.

Their overall affect is a little bit arrogant, and while they do know a lot about some things, they don’t know nearly enough to act like they own the place. Actually, their personality would be best suited to teaching middle school or high school, where they will always be ahead of their students. It’s the adults around them, they can’t keep up with.

I feel sorry for them, a little. The rest of the group is not exactly welcoming, which is what I came up against when I first started. But this individual is getting increasingly insecure and posing like they’re an expert, which is causing them to become increasingly annoying. They’re trying like crazy to show that they already know how to do everything, but they’ve only been on the job two weeks. Meanwhile, the rest of the group, who are not at all intellectuals (or don’t fancy themselves to be), are getting irritated at the apparent arrogance.

All that training, all those certifications. All the degrees… And this new person can’t deal with people. Adults, anyway.

On the other hand, seeing them in action has been a learning experience. It’s reinforced a few ideas with me.

First, that I am so glad I did not go into an academic line of work. It’s so annoying to have to deal with people who are impressed with how smart they think they are. And all the pitter-patter about academic subjects that have nothing to do with anything current or applicable in everyday life… that’s annoying, too.

Second, despite my lack of certifications and qualifications, I can hold my own professionally. No problem. I’m the real deal, and I can get along with just about anybody, I can figure things out, make them right, and I can get the job done. And if I don’t know something, I come to it with beginner’s mind and start from the bottom-up. I tend to overstep and screw up — of course I do. That’s how I learn.

Third, if you want to succeed in life and work, you’ve got to be teachable. For the long run. In every conceivable situation. Not just in the classes you take, but in real life. Each and every day. Ask questions. Stay curious. Don’t get arrogant and think you have it all figured out, because every situation is different, and the people around you won’t appreciate your attitude.

Fourth, resilience matters. All the time. Under any and every circumstance. You’ve got to be able to bounce back — and that’s something I’ve learned how to do, time and time again. You always have another chance, if you give it to yourself.

So, those are the four lessons I’ve learned from dealing with this new person. It’s reinforced things I know about myself, and it’s actually making me feel better about my own abilities and skills. Even if they are a bit like a rock tied ’round my neck, and they’re slowing me down… and they may not last in the job, because our boss is getting irritated with them… at least I’m getting something out of it.

Let this be a lesson to me. Let it all be a lesson to me.

Wanted: Just a LITTLE bit of control over my computer

I’m this close to un-installing Google Chrome. I know it’s popular with the younger crowd, but I cannot stand what a pig it is with resources. I can open Chrome to listen to Pandora, and it “spawns” 5-10 different processes on my computer that eat up resources and slow everything down.

Just to listen to Pandora.

And then it decides it’s going to automatically update itself whenever it danged well pleases.

Yeah, no.

I only wish there were a way for me to control how and when it downloads updates. Having to stop what I’m doing for 5-10 minutes in order for my computer to download and install the latest updates, is not my idea of a great experience.

Anyway, enough of my ranting. Today was better than yesterday. I didn’t go into the office early, and I made some pretty good progress on my tasks. I hit a wall about 4 p.m. and limped through to 6:15. I did get a lot of things done, but holy crap, was I tired.

Still am. I’m making dinner, then I’m going to bed. Rough week.

Still not easy, though

Yesterday was a mixed bag kind of day. Mondays and Tuesdays are turning out to be that way for me, lately. We’ve got deadlines looming, and it’s become increasingly tough for me to get excited about going to work. The deeper I wade into the situation at my job, the more integrated I become into their world, the more crazy stuff I see. And the less enthused I get about having anything to do with it.

I really hate going through my days just wanting to get sh*t done. Nothing more, no enjoying myself, no savoring the moments, just getting sh*t done. How boring.

I really want to enjoy my life, take time to think about things, have the freedom to get up and walk around, get some air, have interesting conversations with people. But the folks I work with are either fixated on their children (I have none), or all they want to talk about is t.v. shows which I think are stupid. Even the new person who I’m training, who has a lot of the same interests as me, seems shallow and irritating.

I know I’m tired. That much is for sure. And I’m under the gun to deliver on some projects that are still suffering in ways. People are pitching little fits over stupid-ass stuff, and I’m just so fed up.

Last week was really challenging, and I came out of it feeling strong. This week, I’m just tired, and I just want to get it all done. It’s not the way I want to live my life.

Then again, it’s not forever. I know I need to get into a field where I can actually make a difference in people’s lives. And I need the time at this job to be able to think through where I really want to go next. My commute is going to be negligible, in the space of another week. That’s something I can’t pass up. So, for the time being, it’s where I’m going to be. For now.

Oh, screw it. Onward.

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.

The Ultimate Compliment

I had a really great day, yesterday. I got a big boost on Friday, after a hell week of missed deadlines, scrambling to catch up, and feeling like everything was falling apart. There were some critical missed opportunities and requirements that I completely lost track of, so I had to redeem myself — to myself, and my teams, both here and overseas.

But at the end of the week, one of my coworkers, whom I respect so much — they are level-headed and kind and have a memory like a steel trap, and they do a fantastic job of managing and supporting people — paid me the ultimate compliment. After I had sent out a status report on Friday afternoon about a project launching, they wrote back to me privately and said they were really glad I was “leading the charge” on that project, because I am such a rational and level-headed project manager.

That really made my day. First, because it came from someone who is an accomplished professional who does not dispense praise lightly.  Second, because they sent it to me privately, which meant there wasn’t another agenda behind it. And perhaps most of all, because it signalled that in some truly significant ways, I have figured out how to overcome the damage of my TBI in 2004 — and indeed, the bulk of my life before that.

See, there are many thing that TBI has screwed up in my life — I get crazy tired over little things, I have intermittent troubles with things that seem easy for others (like following conversations, keeping up with things moving fast, sizing up situations in an instant, and being able to deal with bright lights, loud noises, and crowds of people). Many of the things that everybody else seems to love — going to football and basketball games, sharing meals with large groups of people, and running around like chickens with their heads cut off all weekend — those wreck me for days afterwards. As much as I’d like to do them ALL, none of them is practical for me.

But the thing that really destroyed my self-confidence, was the way TBI screwed up my ability to deal with stresses. Being rational and level-headed was not an option for me, for so many years, because I just couldn’t sort everything out and I would become a raving lunatic over it all. I’d either withdraw into my shell or start to yell and sound off. I’d throw things, slam things around, bite people’s heads off… generally act out, without being able to stop it.

And then I’d have to not only clean up my relationships with others, but I’d have to live with myself afterwards, as well.

Not easy to do. And it seemed like nothing I did could actually prevent me from flying off the handle again in the future. I would just snap — lose it — go off the deep end, sometimes over little things that I knew were not worth the emotional outburst, but could not seem to stop.

Once upon a time, I was know for my calm in the midst of the storm. I was THE person who management assigned to impossible projects that were stalled, because I could pull them out of their tailspin and get them on the right track again. In a very minor way, I was like a first responder, who could rush to the scene of an emergency — run towards the chaos, not away from it — and rescue folks who were stuck there.

After my TBI in 2004… no more. At least, that’s what I thought.

That loss was the most debilitating injury of all — that mortal wound to one of the most key and critical parts of my identity, my “interface” with the world — my level-headed rationality, my ability to stay calm and collected, no matter what sh*t was hitting the fan around me. Losing that for years and years not only cost me my job, and nearly cost me my marriage, my home, my entire life, but also my sense of who I was, the sense of being “at home in my own skin”.

I didn’t actually feel like a real person for many years. I felt like an impostor — and I didn’t have any idea who I was really. Or even who I was supposed to be impersonating.

But then last week happened. And I didn’t lose my sh*t. I kept my act together, I ate my big slice o’ humble pie, I came up with an alternate plan, and I put the wheels in motion on getting things moving in the right direction. I talked to the right people, I connected the right dots. And by the end of the week, we had made progress and were back on track.

And the person I respect most in our group at work complimented me and said they couldn’t imagine a better person to lead the charge.

Wow. Just wow. I’m still just floored by it. I get a little misty over it, too. It’s just that huge for me.

After all those years of being unable to stop the downward slide into chaos and the destruction of my self and self-confidence… getting so many little messages from my brain and biochemistry, that I was not the same person anymore, and the old “me” was nowhere to be found, no matter how hard I tried…  attempting and failing, over and over, to hold myself together and be the person I had come to know myself to be…

At last. At long, long last. I was able to make it through an impossible week, staying intact both in my mind and spirit, and in my outward appearance. Some say appearances shouldn’t matter, but in my work situation, they matter very much. It’s a trust issue. A credibility issue. Yeah, it matters.

And I delivered. I found my team had made some critical errors, and we fell short of the goal. But in the end, I got us back on track, and the next week is about keeping folks there. this can be done. I can do this. If nothing else, the leader of my team believes in me unconditionally, and that’s more than I ever dared to hope for.

From Victim to Survivor… to Human

… or maybe we become something MORE.

I’m reading a paper written in 2010 by a sociology student called How Memory Affects Sense of Self: Stories of Traumatic Brain Injury. I haven’t gotten far, yet, but it’s pretty good. It’s a different sort of “read” than the published scientific papers I’ve been reading, and it’s interesting to see how someone well outside the field of neuropsychology or psychology or neurology, who’s just encountering TBI for the first time, experiences TBI survivors.

One of the things the author mentions is the use of the word “survivor” instead of “victim”. She talks about the folks in her study as “survivors”, because it “is more empowering and positive than ‘victim’ which sounds like something to be pitied.”

Aside from empowerment, I believe there’s an important difference between the ideas of “victim” and “survivor”. And I’ve been thinking that there’s even something beyond that, which is worth considering. I’m not sure if there’s one word for the “beyond-survivor” idea, but I still need to consider it.

These three concepts – victim, survivor, beyond-survivor – all have to do with experiencing a debilitating event. And the first two are all about the event itself. In my case, I’ll talk about TBI, although there have been a number of other debilitating events that knocked me for a loop. Job loss, relationship loss, financial catastrophes, losses of loved ones, a variety of injuries, and so on. They all set me back, and all of them victimized me in some way. And yet I went on living my life.

To me, being a Victim, is about saying, “Something really terrible has happened to me, and it’s so terrible, I have to stop living parts of my life, because the injury took it from me, or I’m way too gun-shy to put myself out there again. I’m safer inside, where my world is smaller, but I feel safer. And f*ck anyone who tries to pull me out of my shell. This injury is permanent, and I have to manage its danger for the rest of my life.

Lord knows, I’ve been there. Right after I got hurt in 2004, I didn’t know why things were so screwed up, but I knew they were. And I was living unconsciously as a Victim, building my life around all the problems I was having, without a really clear view of what those problems were. I had no idea how to fix them. I didn’t even realize the nature of them, or understand that a lot of them could be fixed.  I was living as a Victim. Just half a life — if that.

Being a Victim is about putting the injury at the center of your life, and living your life around it. We can easily make ourselves into Victims, by holding ourselves back from living to the fullest, because of how we think about the injury, how we think about ourselves, or what we believe is possible after the injury has passed. Being a Victim, to me, is about letting an injury define you and limit you, so that you are living less of a life than you otherwise could.

In some cases, the injury is so severe, it’s impossible to NOT be victimized by it.

And yet, that’s where being a Survivor comes in. A Survivor, in my mind, is someone who says, “Yes, that injury happened, and yes, it truly sucked more than words can say. It beat the stuffing out of me and almost took me out… but it didn’t win. I’m going to live my life, no matter what.

After I got a clue about my TBI (and all the others I’d had before), and I realized that I could change things, I started living as a Survivor. I was someone who knew that something terrible had happened to me, and I had really taken a hit from it. But even if I wasn’t living as large as I wanted to, I was still moving towards positive changes, still enlarging my life, still building my capabilities, still working each day to be better than before.

TBI still factored into my life, yet it wasn’t at the center. It was a major player in my experience, and I couldn’t afford to forget it. I still can’t afford to forget certain things and factor them in — like getting enough sleep, managing fatigue, keeping lists to keep myself on track, and remembering that the “crazy” going on in my head isn’t necessarily going to be there tomorrow, if I just get enough sleep tonight and come back to my problems with a fresh view.

Over the past year or so, something new has come up – something beyond “Survivor”, which is actually about just being Human. The thing about TBI, especially, is that it doesn’t always necessarily have to be debilitating. Its effects may be permanent in some ways, and there may be continuous challenges (and yes, problems) you continue to have as a result of it, but over time we can build up skills and abilities and find a new resilience that adds TBI to the overall “mix” of our humanity.

When you get to the place of being able to live your life more or less smoothly, with some bumps in the road that are more speed bumps than cliffs leading down to the abyss, and developing the ability to recover from those speed bumps in a matter of weeks, even days or hours, then I believe you’re past the point of being a Survivor, and on to the business of being Human.

Looking around, it’s impossible to know what challenges everyone is dealing with. Hidden disabilities (or well-concealed challenges) are a part of everyone’s life. TBI is no exception. Yes, it’s different. Yes, it’s not like other challenges. Yes, it has a host of problems that come along with it. But ultimately, it can become part of the fabric of our lives, part of who we are and how we are that doesn’t have to just stop us, but also make us different, unique, and cause us to develop strengths we otherwise wouldn’t have bothered to develop.

That’s pretty much where I am now. I quit thinking about myself as a Victim, years ago. And I don’t really think about myself as a Survivor anymore, either. I’m something else. Yes, I know TBI is an issue with me. How could I forget? But that’s not all I am. There’s more to the story. And in a strange way, TBI helps me find out what that “more” is.

Well, enough talk. The day is waiting.

Onward.

Just very, very grateful

This has been an extremely challenging week. But at the end of it all, I come home to a weekend of rest and relaxation, and sincere gratitude for all the good that is in my life. Things are not easy. They have been extraordinarily difficult this week, and I’ve been teetering on a thin edge between resolve and despair.

But I made it through. And for all the help I received along the way, in the darkest of times, I am truly, truly grateful.

Now it’s time to settle in and read a little, think a little, and relax into my evening.

I hope everyone had a pretty good day.