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.

Funny again

It’s good to be back

I haven’t been funny in a long time. It’s been nearly ten years, in fact.

I used to be funny – cracking jokes and keeping the mood light, when things got too heavy. I brought that to every social situation, helping people see the humor in impossible situations, and helping everyone keep things in perspective.

Every since high school, when I started connecting with people around me, I could make people laugh. And they loved that. I was welcome in so many circles, precisely because I could make them laugh. And in many ways, how much I could get people laughing was a measure of how well I was connecting with the people around me. If I was on the “outs”, I couldn’t convey my unique sense of humor to others. But if I was connected with the people I was with, I could make them laugh.

It’s how I coped, it’s how I got through tough times. And I shared it with everyone. It was good.

After my fall in 2004, however, nothing was funny anymore. It was the strangest thing. All of a sudden, I couldn’t see the humor in anything, and I certainly had no interest in making anyone around me laugh. If someone tried to make me laugh, it was a toss-up if they’d succeed. A lot of times, they just infuriated me.

Over the past few years, I’ve been getting funnier again. At my last job, people laughed when I was around, but a lot of the time, they were laughing AT me, because we weren’t on the same wavelength, and they really truly thought I was weird. That was a result of differences in experience and orientation, I’m convinced. We had such different outlooks and life experiences, they just couldn’t relate to me, or believe half the things I said and did. So they laughed at me.

Fortunately, I didn’t take it all that seriously. After the first few months, I got used to it and was just glad that at least they weren’t total assholes to me.

But in this job, I’m actually making other people laugh. On my terms. Over things we all see and experience in common. That tells me that not only am I in synch with folks there, but I’m really, truly getting better — in my life and my brain. I’m actually funny. I’m cracking jokes that people “get”. I’m making sour-faced individuals laugh out loud — both in person and via email and IM. And over the phone.

It’s good to be able to do this again. It’s such a relief — it makes everything easier. And it’s not only something I do. It’s also something I AM. My sense of self has long been associated with my sense of humor. If I could make people laugh, I knew I was going to be okay. I knew the situations I was in were going to be okay. And like being able to read as much as I wanted, whenever I wanted, it was a marker about how “okay” I was — if I was the person I really, truly meant to be… if I was the person I wanted to be.

It’s been pretty grueling, going without so much of what used to make my life worth living. But gradually, it’s been coming back. Holy crap. It’s coming back. I’ve been testing it out over the past months, and yeah. It’s back.

One of the really good results of all this win-loss-win process, is that now that “gone” things are coming back, I appreciate them all the more. And I have a better understanding of their place in my life. Not being able to read before, makes me extra appreciative of being able to do it now. And being able to create and enjoy humor again, makes me realize just how valuable it was to me before — and it also makes me appreciate just how connected I actually had been to my peers, when I was younger. I always thought of myself as an outsider who wasn’t welcome, but in fact, I was someone who literally fit in with every crowd, in one way or another, and humor made that possible.

For decades, I thought of myself as an outsider who never fit in anywhere, but that was actually in accurate. I did fit in. I just didn’t realize it. And I missed out on the chance to have that experience for so many, many years. Why and how that happened, is another story — and it’s a mix of both the way I was brought up and the injuries that messed up my thinking and experience for so much of my life. But whatever the source, I really did miss out on so much…

Oh… I’m starting to get a little teary-eyed. I’m tired, and when I’m as worn out as I am, I’m more emotional. That will never do. I’ve got a long day ahead of me, and I don’t want to start out by getting emotionally overwrought. Or start out crying. That gives me a splitting headache and throws me off. I’m just not 100% after I cry, for some reason. So, I’m going to stop thinking about this right now and get my mind off it.

Bottom line is, things that I thought were gone for good… aren’t. It’s taken a long time for some of them to get back, and I still have a ways to go to restore some of the others. Maybe those things will come back, maybe they won’t.

But whatever does come back, I can appreciate it all the more.

That’s for sure.

Onward.

A whole new me shows up

It’s interesting. My neuropsych is about to get to know a completely different side of me, which I suspect they had not encountered much before. I’m not even sure if they know this side of me exists.

For years, I’ve been going to see them early in the week, before things got too crazy, and the rest from the weekend hadn’t worn off, yet.

Now I’m seeing them at the end of my week, when the weekend is a distant memory, I’m half-baked from exertion, and I just don’t have the time and patience to be thoughtful, mindful, and all that contemplative stuff.

I suppose it’s just as well, because I’ve been trying to tell them about the challenges and hurdles I have to deal with on a regular basis, and they just don’t seem to think there’s that much to it. I don’t want to make too much of it, but by the time Thursday evening rolls around, I’m half-crazed with fatigue and stress and frustration.

And I don’t have nearly the attentional bandwidth and concentration I do, early in the week.

It’s been a huge adjustment for me, to see them Thursdays instead of Tuesdays. I hate to say it, and I hate to admit how hard it is, but it really tears me up, not being able to check in on Tuesdays, as normal.

Well, things change. People change. Situations change. This is just one of those things.

But it would be nice to have some input and check in, before the whole of the week gets away from me.

I guess I’ll just have to adjust and acquire some new coping skills.

Geez, what a pain in the ass.

How I am today

I didn’t get much sleep last night. Things have “blown up” at work, and a project I was managing and thought was fine, is NOT fine. It’s crashed (not quite burned), and now I have to get it put back together and back on track.

I’ve done this before at this job, but on a much smaller scale. This one is very big and very high-profile. And the (over)reaction to the date slipping is making me reconsider taking a permanent job there. I had been thinking seriously about going permanent with these folks — they had hinted at it a number of times — and everything was looking good.

Then things went wrong, and the reactions of people outside my group have caused me to reconsider my plans. It’s one thing for me to screw up this badly — which I may or may not have done. There are some things I could have done very differently, which would have helped. But I honestly didn’t realize I needed to do them, and even though people were around to help me, I wasn’t aware I needed to ask for help.

Now I know.

But the folks outside my group, who are the ones making up the unrealistic deadlines, are having little hissy fits and flipping out. So, the whole grand progressive business world ideal of “failing fast” and “learning from mistakes” is just a bunch of B.S. — what matters is that you meet your dates — and ONLY that you meet your dates.

Yeah, that works out really well, for sure. Talk about sucking the life out of your work.

So, now I’m back to considering myself a contractor who’s just there to do a job. In a couple of weeks, we’re moving to a new office much closer to home, and that’s what I’m focused on — being close to home. I’ll be able to go home for lunch and take a nap. I’ll be able to just roll out of bed and go to work. I will be closer to everything that makes up my everyday life, and that’s what matters.

The simple fact is, I need to not get attached to my visions of how I think things will eventually turn out. I had been thinking that I would just sail through this first set of challenges, and all would be well.  Untrue. I’ve had a number of things blow up in my face, and I’ve had to scramble a number of times. As my boss said, “It wouldn’t be a real project, if there weren’t a fire.” Everybody else I work with has been through this to some degree or another, so now it’s my turn. But what this means for the long term, who can say?

Anyway, I’ll get what I can out of the situation. I’ve been on a roller coaster for the past two days — no, the past two weeks — and my world pretty much turned to sh*t in an instant. All the miscalculations, all the drama. Who needs it?

Then again, just because everyone else is all worked up about things — or my boss is saying they will be, in order to motivate me and get me moving with a kind of panic-anxiety booster fuel… I don’t need to lose my cool over it. Their stuff is their stuff. I’ll just keep going, to get it all done, and keep steady at work.

If nothing else, people are impressed by how calm and composed I am in the midst of it all. This calm, composed demeanor is genuine, and it comes from years of managing outright panic in the face of very real crises. It comes from all my years of living in a sea of confusion and overwhelm, and figuring out how to function, anyway. It comes from years of walking around in a fog and doing a damn’ good impression of someone who’s mellow and chill.

And the good news is, I’ve got it all together. This is the first time I’ve been able to hold my sh*t in the face of very real problems, since I fell in 2004. I’m not melting down, I’m not losing it at work. I’m not flying off the handle, and I’m not flipping out, throwing things and slamming shit around on my desk. It’s cool. I’m cool — on the outside. Inside, I feel like I’m dying — like the Allman Brothers song:

Sometimes I feel… Sometimes I feeeeeeel

Like I’ve been tied to the whipping post… tiiiiiied to the whipping post… tiiiiiiied to the whipping post

Oh, Lord I feel like I’m dyyyying…

But I’m not dying. I know I’m not. It just feels that way. And in another couple of weeks, I won’t feel this way anymore. So, I’m dealing with it, walking through the pain and agony. Every breath pains me, and I don’t know whether I’m coming or going. My demons are flailing around — overtime — and while I can see my way through, who knows what will pop up along the way?

Whatever does, I’ll deal with it. I can do that. That’s how I am. It’s who I am. I used to be like this — in the most trying of circumstances, I would remain calm and prevail. I’m doing that again, and although it feels excruciating… f*ck it. I’m here. And in the midst of this all, I feel like my old self again.

Which hasn’t happened in a very long time. And I thought it would never happen again.

But surprise — there I am again. That side of me is back. It’s partial, and it’s struggling, but it’s there. And that’s good enough for me.

Okay, back to it. Suck it up and wade back in.

Onward.

 

 

 

 

 

 

Crushing. Just crushing. And yet…

The week ahead of me is one of those one-foot-in-front-of-the-other types of weeks. I can’t think too much about things, because inside my head, it’s a swirling mass of panic, rage, fear, anxiety, frustration, and a whole lot of other stuff that has no business coming to the surface.

I’m working my ass off, keeping positive and moving forward. It is a herculean effort, and when I think about how f*cking hard I have to work, to keep myself on track, I’m actually really proud of myself.

Because how things are on the outside is nothing like how they are on the inside.

And to all appearances, I’m succeeding, I’m doing well, I’m holding my act together.

While inside, I’m absolutely dying — or bordering on aggressive rage.

One thing that TBI has taught me, is how to not get sucked into the turmoil that seethes beneath the surface. There is *always* turmoil beneath the surface with me. I walk around looking quite calm and collected, while inside I’m anything but that. I know the chaos is there. It’s like having a Tasmanian devil creature living in a sound-proofed back room of my house. From the street, you can’t see it, you can’t hear it, and you’d never know it’s there. But inside my house, I know it’s there. And even though I can’t hear it tearing around shrieking and howling and slamming into the walls, I can still feel the thud-thud-thud of the creature throwing itself around.

It’s there. I’m not sure it’s every going to go away. And yet, I don’t have to let it out of its room. I don’t have to let it into the rest of the house. I can live my life, sliding food under the door now and then to keep it satiated and a little calmed down. I can go about my business, taking care of that side of me, to make sure it doesn’t get too wild, too out of control. I know it’s there. I’m not sure it’s ever going to go away. The confusion, frustration, fear, anxiety, panic, anger…

Whatever. I have a life to live, and I have tools in place to keep me balanced and steady, no matter what.

In a way, learning to manage my own internal state is helping me manage my external state. It’s pretty depressing, sometimes, thinking that this crap may never go away. But when does it ever — for anyone? We all have to deal with it. We all have to handle it.

It’s crushing. It’s demanding. It sometimes feels like too much.

Then I realize there’s more to the picture. There’s the amazingly beautiful weather today. There’s the wonderful day I spent with my spouse, yesterday. There’s the camaraderie of my coworkers waiting for me. There’s the calm I feel as I settle in for a good night’s sleep on the weekend, when I don’t need to set my alarm. There’s all the amazing beauty and inspiration I find from so much of life.

Yes, it can be crushing. And yet… there is more.

The book is going well

Working… working…

So, I’m finally sitting down to write one of the books I’ve been planning for some time. It’s an extended version of my series of posts I wrote about Recovering a Sense of Self after TBI. I had already written a good bit, for starters, so it’s filling out nicely.

Which is good, because I need to make some headway on it, and this coming week promises to be really crazy. I’ve got three big deadlines looming at work, and I’m going to be flat-out pretty much the whole time.

This book is letting me focus in on one thing that I can do, rather than a million different little details that I need to make sure everyone else is doing. It’s a lot of work, but it’s good. And it’s a welcome change.

It’s also reminding me about a lot of things I’ve conveniently blocked out of my mind, for some time now. All the issues that come up after TBI, all the confusion, the frustrations, the dead-ends, and back-tracking that’s a regular part of TBI recovery… it can get to be so overwhelming. And when you’re just beginning your recovery, finding a pattern to your life, a structure and meaning… well, that’s the main challenge. It’s critical to put positive, constructive structures in place, so the brain can acclimate to a routine again. Our systems are lovers of routine, and we need to have a sense of ourselves in a context that makes sense.

Beyond TBI, this book is teaching me lots about the world in general. The things that apply to TBI recovery, can also apply to other neurodiverse challenges, as well as life for the general populace. With TBI, they’re all made that much more extreme. Human relationships, how we live our lives, how we find meaning in the world, how we build a sense of who we are and how we will / would / can / should be to ourselves and others around us… all that becomes so much more confusing and frustrating. And with TBI they also all come into much clearer focus as important — essential — parts of human life and experience.

It’s like, with TBI we are pushed to the outer limits of what it means to be human. And with TBI recovery, we are forced to reach deeper inside ourselves and farther out around us, to develop the resources we need. People without TBI could probably learn a lot from TBI survivors about what it means to be fully human. The thing is, everyone is so afraid and under-informed. So who wants to listen to us?

Well, whatever. I’ve got a couple of hours to do some more writing, then I’m spending the day with my spouse. The weather is beautiful, and we have an all-day outing planned. So long as I get back at a decent hour. Because my day starts early tomorrow.

Onward.

Swimming through the downwelling — Got my STP going on

Good stuff for a tired-ass rainy day

When in doubt, Stone Temple Pilots are good company to keep. I’m listening to No. 4, and it’s as good as ever. I went through a period, over the past few years, when I didn’t listen to much rock music. It was a lot of electronic stuff — trace and whatnot. Always good for getting me flying down the road, to and from work.

Lately, though, I’ve been getting back to my good old rock ‘n’ roll. Lots of hard rock, as I drive to and from work. And it feels normal again. Like I’m picking up where I left off, a few years back.

It’s like I went on a detour for a few years. Thinking I was going to be or do something different. I blame that last job I had, where I was so out of place, and I just didn’t fit in at all, and I needed to take the edge off things.

The whole last ten years feels like a big-ass detour for me. It was that damn’ mild TBI in 2004 that screwed me up. I’m still pissed off about it, and how it derailed me. I’ve been swimming upstream, trying like crazy to get where I’m going, fighting a current I couldn’t see — a downwelling, as they call it in the ocean – watch a video about surviving downwelling here.

In a downwelling, when you’re scuba diving, an invisible current hits you and carries you down-down-down into the depths — potentially past your approved depth. It can take you down very quickly — fast enough to increase the nitrogen in your blood enough to make you feel — and act — drunk. And also pressurizing you very quickly. It’s crazy. If you get caught in a downwelling and can’t get out, you’re done for.

That’s kind of like what chronic mild TBI / concussion is like. Most people see their issues resolve in weeks or months, but some of us are stuck with them, and they can catch us unawares and plunge us into the depths — towards the abyss — before we even know what’s happening. It can be deadly. And if you choose wrong, you can get totally screwed up.

I didn’t realize until late 2007, that there was really a problem — three years past my injury. Everything went downhill, and I didn’t even realize it. Money was disappearing so fast, I might as well have set piles of it on fire. I jumped from job to job, not realizing how it would affect my future job prospects. I could not read, I could not learn, and I felt like I was literally disappearing from my life. I could not go outside very much, because of my light and noise sensitivities, and I had cataclysmic panic attacks that felt like seizures.

I was in the grip of a “life downwelling”, and I didn’t know which direction to swim to escape.

A number of things happened to help me along the way

  1. I realized that something was wrong
  2. I realized I needed to do something about it
  3. I hunted high and low to find information and people who could help me understand what was happening
  4. Almost by chance, I connected with an excellent neuropsychologist who was able to help me soldier through
  5. I just kept going, no matter what

I’m now at a place in my life where I’m back on track. My mountains of debt are gone, my job situation is stable, and I’m able to read again.

And yet, I feel like a stranger to myself.

Technically, I supposed no one really knows themself inside and out. We all delude ourselves to some extent. But with TBI, it feels to me like there are a ton of gaps that I just can’t fill. I don’t even know where to start. It’s like my life is a big hunk of swiss cheese with a lot of holes in it, and I don’t even know the holes are there, till it’s too late. I’m in trouble again.

Anyway, STP helps me get my mind off that. They help me just keep going, even when I’m not feeling up to it. Keeps me swimming — out of the downward spiraling current and up towards safety again. A good dose of heavy guitar and rock lyrics gets me back on track in useful ways.

Gradually, I’m coming back to where I want to be. It takes time. And I need company, along the way. STP is good company. Thanks, guys.

Music is the best company I can think to keep. It’s there when I need it, and I can always turn it off, when I’m done for the day.

Speaking of the day, I’ve got to get on with it. I’ve got a handful of things I need to do today, including resting up. It’s been a long, long week, and I need a break, for sure. I’ll get that break later today after my chores are done, and I can comfortably settle into my bed, pull the covers over my head, and just check out.

Looking forward to it.

But in the meantime, there’s always hard and heavy rock music.

One thing they never tell me about TBI – but they should

WTF is going on in there?

I had another irritating session with my neuropsych on Thursday. We’ve changed the day of the week we meet, and now… instead of meeting early enough in the week for me to be my normal self, I show up at their office like a raving maniac, in a fine style they have rarely seen.

These days things are different for me, because I’m pushing up against the envelope of my comfort zone at work… and I am tired. So tired. I’m like a friggin’ lunatic, by the time I get to my session. My neuropsych can say one thing — one thing — to me, and it sets me off. I’ve got this hair-trigger temperament, by Thursday night, and that’s usually about the time when I realize how screwed I am, how little I’ve accomplished that I needed to get done, and I’m starting to panic about the next day.

My neuropsych has never seen me this way, so maybe this is for the best. They seem to think that I have this even-keel, mellow personality that’s all thoughtful ‘n’ shit… Like nothing can get me riled, I’m unflappable, and I’m in command of my inner state at all times. Well, let me tell you, by Thursday night, if I’ve had a crazy week, all bets are off. And I’m ready to rumble.

We’ve “gone ’round” a few times, now. This week and last. This individual jumps into my train of thought, trying to “correct” me, and I’m seriously not feeling it. I’ve got no patience, I’ve got no open-mindedness, I’ve got no extra cycles to put up with B.S. And the other thing is that my neuropsych is tired, too, so they’ve probably got their own issues going on.

Especially when I show up at their office, having trouble with my excellent life, when — seriously dude — I should be fine. But I’m not.

No. I’m not.

Because I’m not myself. I’m someone else. And while I should be fine — with a good job, a house, a long-term marriage, and a couple of cars in the driveway — I’m not. It’s not like I’ve had half my brain removed, or I struggle with constant seizures. It’s not like I was ever in a coma, or I had a spike sticking out of my head. I never had to have part of my skull removed to relieve the pressure from an impact.

I’ve just had a bunch of mild TBIs — concussions — with little or very brief loss of consciousness. I “should” be fine. But I’m not.

And that’s the thing nobody ever tells me about mild TBI — how it’s the gift that keeps on giving. How a simple fall down some stairs can send me down a weird, dark pathway into a forest with patchy moonlight filtering through the trees. How it messes up my head in very unique ways that are pretty much hidden to me, until I bump up against a situation that “should” be easy for me. But isn’t.

To me, years after I started down this path of actively recovering from all my brain injuries (9 “mild” ones, by my count — probably more), what’s clearer to me than ever before, is how TBI just never quits. It sets things in motion that are invisible and disruptive, and if you aren’t vigilant and if you don’t develop strategies for dealing with all of it, your condition becomes chronic and worsens over time. The simplest things that should be so clear, confuse you. You don’t recognize yourself. You’re “not quite right” in the eyes of people who knew you before. And it can be well nigh impossible to figure out what the hell everybody is so upset about — because from your point of view, everything seems fine. It all seems fine.

TBI never quits. That is as true for Mild TBI as it is for any of the others — perhaps even moreso for Mild TBI. The changes that take place in the brain affect the mind, the body, and the way the two work together. And over the long term, these changes keep happening. And with mTBI, the issues can be so irregular and “spotty”, and you can be so busy just living your life, that you don’t see the warning signs — until it’s too late.

And you’re in hot water again.

What nobody ever seems to mention, is that mild TBI can become a chronic condition that progresses over the course of your life. It affects every aspect of your being, and unless you can figure out that that’s actually happening, and learn to manage it, the long-term prognosis can be sketchy. Even, well… bad.

I don’t know why nobody ever talks about this — at least, they don’t talk about it within my earshot. Traumatic brain injury symptoms often clear for people. But for some, they become chronic… they don’t go away…. they morph into something else over time… and something else… and something else…. and they can turn you into a person you hardly recognize and don’t exactly understand — in place of the person you thought you were.

Maybe people do discuss it, but it never trickles down into the general populace.

Or maybe it’s that I’m so busy living my life, and I’m so busy trying to figure things out, that I don’t have time to seek out the inner secrets and latest cutting-edge research about TBI recovery. My neuropsych has certainly not discussed this with me at length — probably because I get really upset and bent out of shape when they start to talk about TBI and how my brain has been affected by it. Strangely, although I can write about it freely here, I have a hell of a time discussing it with my neuropsych. It freaks me out. Way too much. So, we don’t talk about that much — just about how I can build the skills to better live my life.

That’s actually working out. It’s a good strategy. I have this body of skills and approaches built up. At the same time, though, it feels like they’re built around a shell of a person — I’m the outside appearance of myself, but inside, it’s hollow and dark and empty, and I don’t know who’s there anymore.

I try not to worry about it. I’ve got to get on with my life and live it, the best I know how. But when I’m tired… and when I’m tired of being tired and not knowing who the hell I am… this comes up, front and center, and it works on my mind like nothing else.

Of all the things about mild TBI, I’d have to say, the most damaging part is having lost my sense of who I am, what I stand for, and where I fit in the world. It’s a casualty of the injury, and nobody seems willing to address it — as though ignoring it or “working past it” is going to solve things.

Oh hell, I’m just going to write a book about it. For TBI survivors, their loved ones, and for the caregivers who know so much — and yet so little. Losing your identity and having to reconstruct it again, despite being “fine” in the eyes of everyone else, is a problem. It takes too many of us down. It’s an issue. It’s a problem. And I don’t feel like sitting around bitching about it, anymore. It’s time to do something about it.

In fact.

Onward.