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.

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.

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.

Letting it go – for good reason

I missed the original date, but maybe they have an “encore” event this month?

I had a lousy meeting with my neuropsych on Friday evening. First problem was, it was Friday evening after a very long week. I was not in a good space, and neither was my neuropsych, apparently. They kept wanting to talk about diagnostic labs and bloodwork and tests and all that stuff that goes along with figuring out levels of vitamins and what-not.

As it turns out, I have been running a low-level Vitamin D deficiency for about five years. I am sure it has not helped my cognition in the least. But my doctor told me they weren’t worried about it, because they figured it would sort itself out. I was supposed to be supplementing Vitamin D — which I often forgot or just decided not to do. I resolved — about a million times — to spend more time outside and get my Vitamin D through natural sunlight. But then I didn’t do it, and my D levels stayed low — to the point of danger.

The weird thing is, my PCP didn’t seem to think much of it. Despite the fact that Vitamin D levels directly affect cognition, and you can end up feeling foggy and dull as a result. I’ve felt that way for a long, long time — but since I started aggressively loading up on Vitamin D, and my levels have improved, I don’t feel nearly as foggy as I used to. I’m now within the acceptable range (in the lower 33%, which I’d like to raise), and I feel more clear and “with it” than I’ve felt in a long time.

And that pisses me off, that my PCP just kind of blew off my Vitamin D levels and was willing to wait a year, to see if they were better. It’s like my doctor waits for me to report symptoms, but to me, everything is a tangled mass of experiences and feelings, and on any given day I can feel both fantastic and terrible, all at the same time, so making sense of any of it is sorta kinda impossible in my jumbled-up head. So, I take a stab at things, and if I get lucky, it works out. If it doesn’t work out, I try again — and again — and again — till I get where I’m going.

Ultimately, it pays off, but it’s a long time getting there, sometimes.

Anyway, I got pretty angry that my neuropsych kept talking about healthcare and choices and things to do to get proper care. I couldn’t see what it had to do with anything that mattered at the time, and it made me angry that they were going on and on about the best process to follow to get medical help. Now, I realize that they were kind of pissed off that my doctor had done nothing about my Vitamin D levels — that they hadn’t kept an eye on it and raised a flag earlier.

Part of the responsibility is mine. I didn’t think that Vitamin D was that big of a deal, and I figured I could just go outside regularly and get the light I needed to synthesize. Untrue. I don’t go outside nearly enough (as is the case now, as I sit at my desk in my study, looking at the outside, rather than sitting on the back deck, working “in the wild”). I didn’t realize that Vitamin D affected your cognition and mental functioning. If I’d known that before, I’d have done more about it.

But that’s water under the bridge.

Looking back, I realize that I spent a lot of time being really angry with my neuropsych. I didn’t tell them that, but I was upset to the point of wanting to not go to them anymore. That happens, every now and then. I don’t “get” what they’re trying to communicate to me, I feel like they’re talking to me like I’m an idiot, and I get resentful and resistant. And I want to just drop it and just live my life without having to work at it.

But that generally doesn’t go that well, and if I walk away from my neuropsych, I walk away from one of the very few people who understands what’s going on with me — and is equipped to talk some sense into me. Going it alone has a way of backfiring on me. I have few real friends. I’m on friendly terms with a lot of people, and I feel pretty connected with other people, but I have no immediate support group I can turn to — other than my neuropsych. I also have a therapist I see — but that’s more to check in and make sure I’m taking care of myself and to build some self-preservation skills in the face of dealing with my spouse’s various illnesses (both physical and mental). Other than those two, I’m on my own.

Anyway, yesterday I decided not to keep harboring that anger, and I just let it go about my neuropsych being a pain. I realize now that what made me angry, was 1) being really tired after a long week, and 2) not fully understanding what they were talking about, and why. Also, I think my neuropsych was tired after a long week, and they were in rough shape, as well. I’m the “easiest” patient they have to work with, I believe. There are tons of other things going on for them, and I’m just one face in a crowd of many — many of whom need a lot more support and assistance than I.

This is how it often is. When I’m really tweaked and upset, it’s best that I just get some sleep, take a long walk, and let it all settle. Then I can get my balance again, get my bearings, and enjoy the life I have, instead of stewing about the life I’m imagining.

Weather is nice today. I should be able to get that last lawn-mowing of the season done, later this afternoon when the grass is more dry. I may just go out for a long ride, too. I hear the colors are getting nice up north.

Making sense of … nothing

What happens here, affects everywhere

WordPress featured a blog (no longer actively maintained, but still there for posterity), about the experiences of someone who had a stroke at 33. She chronicled her experience at http://jadepark.wordpress.com/category/the-stroke/ and the pages are still up, and I expect them to stay that way, unless she decides to take them down.

I hope not. Because every coherent post that gets written by a brain injury survivor — even the incoherent ones — is one more voice that’s out there for people to read and to understand.

And it’s one more voice for “us” that one person uses that actually serves many. Not everyone has the interest or ability for writing. Not everyone has the ability or wish to discuss the details of their life with others. We bloggers are an interesting group — part voyeur, part exhibitionist… part narcissist, part humanist… part artist, part scientist…

I think there is a part of us that believes — as I always have, from the time I was very young — that “we” do not belong “to ourselves”. The experiences we have in the course of our days are in fact the “property” and domain of every human being on earth. We are none of us separate and apart from each other — the separation is something we invent out of expediency, because we have to be able to categorize and organize and find patterns in our lives. Without recognized patterns, without a larger context for events and experiences that we can see and understand, life becomes meaningless, chaotic, pointless. And we lose ourselves. Fast.

After brain injury, it’s easy to get lost. It’s almost a requirement. A central part of our health and well-being — mental and otherwise — has been disrupted. The roads from Point A to Point B have been torn up by a hurricane… a tsunami… and we don’t find out for some time, how much damage was really done. In fact, the damage can keep happening, as we try to do things a new way, and find that the alternate routes we took didn’t work. We’re doing the mental equivalent of trying to drive heavy equipment across unpaved roads, and we get bogged down.

And we can get hurt again — mentally, physically, emotionally, spiritually.

Brain injury is the “gift that keeps on giving”. And because so many people live in fear and anger and judgment and are moving WAAAAYY too fast, they don’t give us a chance to catch up. Everybody’s in such a damn’ hurry — and to where? To where, I ask you?

I get angry at this. The way our world is structured, is terrible for anyone with an injury or a shortcoming of any kind. We’ve latched onto the idea of “survival of the fittest”, not realizing that it’s cooperation, not competition, that ensures the survival of species. It’s community that makes many of us fit — rather than isolation and alienation and exploitation that weakens us all, even as it makes a select few feel more powerful than they truly are.

I don’t doubt for a minute that competition helps to sharpen the wits and abilities of individuals. But that’s not all there is to the story. At some point, you need to be able to see that cooperation is of greater value in certain circumstances. We’re not all one-trick ponies, capable only of a 2-dimensional behavioral repertoire.

But I digress. The point I’m trying to make is that in the great seething sea of brain injured individuals trying to get through to the next day, it helps to have some contact with others who “get” us. Who have had the same sorts of experiences as us. Who are struggling through as best they can — sometimes improving, sometimes sliding back — and who report back to the rest of us, what happened to them that day.

On Jan. 30, I withdrew from my MFA program. I ran into a friend on campus after, and told her the news. I could not read more than a paragraph.

 

“I’m taking a leave of absence,” I said.

 

She replied, “I wish I had a stroke as an excuse for my short-term memory issues!”

 

The old me would have told her that was rude. Or that it hurt my feelings. The new me stood stunned, unable to come up with a quip. And then I got into my car and cried. (from the Buzzfeed post)

There’s the anger we all share, of course.

And then there’s the other stuff — the interesting tidbits, even the hope.

For a month, every moment of the day was like the moment upon wakening before you figure out where you are, what time it is. I was not completely aware of what had happened to me. I was not completely aware of my deficits, in an ignorance-is-bliss sort of way. I was unable to fret about the past, or the uncertainty of the future. (from the Buzzfeed post)

Or just the curiosity.

But this post is getting long. I sat down, intending to write about how I had to “reset” myself yesterday and get out of my hyper-achiever mindset from the previous week. Then I saw the notice on WordPress about the stroke survival blog, and it got me thinking. I’ll write about my mental – and physical – reset sometime soon. Maybe later today. But for now, I’m going to go outside and get some exercise. Go for one of my long walks and just enjoy myself on this beautiful day. The rain has passed. I have gotten past the dreariness about people dying and having terrible things happen to them. I have not really looked at the news for over 24 hours, and I’m going to keep it that way.

I have a whole day to myself ahead of me, and that is good.

Time to make the most of it.

Onward.

Rebuilding my life, one experience at a time

It happens to the best of us

I’ve been thinking a lot about my life, lately, seeing some things fall away, seeing some things come into focus.

My spouse has been really slipping, lately — emotionally and mentally. They forget things and fly off the handle over things, alienating coworkers and friends alike. They’ve been doing this for a long time, but they’re starting to run out of friends. And their volatility is starting to affect them professionally, which is a “hit” personally, since their self-image is really tied up in their professional performance.

There are things they can do to help themself, but they don’t do those things. I believe it’s neurological, and I’m going to look into finding them a competent neuropsychologist to work with, to help them think better. It’s the least I can do.

On the front of my own life, I am seeing things come more into focus and “cohere” more than ever before. For a long, long time, I had a very fragmented life, where the things I did in my free time had nothing to do with what I did for a living. I didn’t see the connection. I basically worked to earn a paycheck that would let me live my “real” life. Now I see my 9-to-5 job as being an extension of who I “really” am in the rest of my life, and the things I experience and learn each day on the job, feed my free time and contribute to my developing philosophy of life.

The two are not entirely separate anymore — work and free time. They blend and contribute to each other in significant ways. In fact, one of the most encouraging developments of my life has been the quieting of the conflict I feel around going to work each day, instead of spending my day reading and studying. In a very real sense, I now experience my everyday life as an opportunity to study “in the wild”, and also to test out my observations and theories about how life works, and what it all means to me.

My day job and my everyday existence is no longer a hindrance that keeps me from living up to my true potential — it’s a valuable source of insight and proof of my concepts (or contradicting them), which is better than any amount of classroom learning or book study.

But I do still wish I had more time to read and write. I run out of steam at the end of the day, and all I’m really good for is making supper and then spending a few hours “veging” in front of the t.v. till I roll off to bed. I have about an hour in my mornings, if I’m lucky. And the weekends, too, I have some time. But I don’t have nearly as much as I’d like.

Fortunately, we’ll be moving to an office that’s closer to my home in about a month, so that may change.

Anyway, back to what I’ve been thinking about — losing the self and rebuilding again….

Some years back, I wrote a section of this site called “TBI SoS – Restoring a Sense of Self after Traumatic Brain Injuryread it here” and I should probably definitely revisit it. It’s been nearly four years since I first wrote it in early 2011, and some things may have changed. I know my sense of self has changed… my sense of purpose and potential…. and I’m quite sure I’ve learned a lot in the last 3-1/2 years.

Losing the sense of who you are, as so often happens with TBI, can be a viciously terrible thing to deal with. It’s alienating and stunting, and it feels like it kills a part of you. In a way, it does. A part of you can die, when the connections in your brain are frayed and twisted and stripped. Even the most “minor” head injury can wreak havoc, when your most customary neural pathways are diverted in subtle ways. Over time, the damage can continue… in ways that don’t seem all that apparent to the scientific community, but which are pretty clear to me. I’ve written about that before, and I should probably dig up those writings and put them into book form. I feel like they should be shared.

But I’m digressing again. The bottom line is, when TBI strikes — be it mild, moderate, or severe — your entire world can be rocked off its foundation. And in the ensuing days, weeks, months, years, continued impacts from the flow of life can dismantle your place in the world, your sense of who you are, your ability to function, your whole identity, in hidden and debilitating ways.

That’s where I was, in December, 2007, when I first started blogging. I was in bad shape, and I had no idea just how bad. All I knew was, I needed to set some things straight. And I needed help.

So I did what was necessary, and I also reached out and got the help I needed. And in the process, I have rebuilt my life and my understanding of who I am and where I fit.

Ironically, though, I still don’t feel “like myself”. I feel like someone who is living the life I want to live and making their way through the world in my skin. But it doesn’t feel 100% like me. Now and then, I’ll have a glimmer of familiarity. And sometimes I’ll have an extended time of feeling like myself again. Since I’ve been able to read and write for longer periods of time, again, I’ve felt more like myself than I have in a long, long time. And I feel a closer connection with my writing subjects and writing practice.  But somehow it doesn’t last.

And I wonder… what is that makes us “who we are”? What is it that defines our identity and our sense of self? How is that constructed, and how can we reconstruct it — in the face of loss and having to say good-bye to parts of ourselves?

This question is really key for me. It really moves me, and it really compels me. People write comments on this blog that talk about exactly what I struggle with — that sense of having no clue of what’s going on, or why it’s all going south… a sense of loss, a sense of being cut off from the possibilities of life, a sense of never being the same after the accident(s).

A lot of people feel that — but when your brain has been injured, it’s different. It’s just different.

And dealing with that, is probably one of the biggest challenges to brain injury recovery. Because it takes the kind of focus and intention that work best with an intact brain — or with the help of a competent professional (and there are too few of them around).

Oh, hell. I dunno. I’ve got to go to work. I’m thinking about these things a lot, lately, as things go really well at work for some strange reason. I’m doing extremely well under the conditions there, and I’m getting a lot of compliments and support from my once-skeptical coworkers. I’m making believers out of people at work, over things that I know to be true in my heart — that we can, and will, make it through in one piece.

At the same time, I have no idea what’s going on. Seriously. I just cannot follow things that people say to me, and I am flying by the seat of my pants, half the time. I am nowhere near as master-ful in my command of my subject matter, as I would like to be. I am literally winging it, but nobody seems to notice. I have a regular string of little “wins” on a daily basis, and I focus on them. Never mind the equally frequent “losses”. I concentrate on the “wins” and pretend the “losses” never happened. And it seems to work.

On the surface, I really can’t worry about what chaos swirls around, deep down in side. I can’t worry about the confusion in my head, and how I’m constantly trying to keep two steps ahead of things and narrowly averting disaster as I go. I just can’t worry about it.  I just keep dancing, keep moving, keep going with the flow. And it all works out.

But it still feels weird and unlike me. It doesn’t feel like “me” at all.

As long as it works for others and keeps a paycheck coming in, and as long as I’m genuinely able to perform and do the jobs I’m given, all is well.

Good gone bad in a hurry

Bummer… and things were going so well

So, last night I was fixing supper, and I messed something up. My spouse was in the kitchen with me, and they started saying things that sounded critical to me, like they can do better than me. I got really agitated and frustrated, and I had a bit of a blow-up at them. I was really angry over them finding fault with what I was doing and comparing their own performance to mine. It was a double put-down. 1) I screwed up, 2) they can do so much better than me.

It really pissed me off, and I got so angry, and then they went into their usual behavioral “repertoire” of acting like I was a bad person for getting angry and yelling — like I was threatening them and being abusive. Oh Lord, oh Lord, oh Lord… I was upset and trying to express myself, and all they could do was make me look like I was the one at fault, and my anger was a threat to them.

I got pretty angry — not over the top, throwing-things angry, but so frustrated and agitated that I almost couldn’t see. And then POP, something in my head felt like it snapped, and I had this sensation of my brain locking up and slowing down to a crawl. It was like someone cracked open a smelling salts capsule — but it had the exact opposite effect. I instantly felt dull and numb, with my face numb and tingling, and my hands tingling. I could physically feel it in my head. I turned into an instant idiot — it was hard for me to understand what was being said, and I couldn’t put words together. My head felt like it had filled up with cotton, and I was suddenly so dull.

I didn’t think it was a stroke, because I haven’t been impaired on one side of my body or the other — and I stuck out my tongue to see if it bent from one side or the other, and it didn’t.

Then again, according to the National Stroke Association, here are the signs of stroke:

Stroke symptoms include:
  • SUDDEN numbness or weakness of face, arm or leg – especially on one side of the body.
  • SUDDEN confusion, trouble speaking or understanding.
  • SUDDEN trouble seeing in one or both eyes.
  • SUDDEN trouble walking, dizziness, loss of balance or coordination.
  • SUDDEN severe headache with no known cause.

So, maybe it was one. I don’t know. One side of my body wasn’t weaker than the other, which is what I usually associate with stroke. I have a meeting with my neuropsych this afternoon, so I’ll check with them. I’m hesitant, because I don’t want trouble from all this. Plus, it has happened to me before — about 3 weeks ago after a meeting when I got really upset with the behavior of some of the folks in the meeting. It was very similar to that time — I felt something “pop” in my head, and I turned into an instant idiot — couldn’t put words together, had trouble speaking, felt slow, and had a low-grade headache.

This time I didn’t get nearly as angry. But the feeling was the same, and now I’m dense and dull and I’m having trouble putting words together. Three weeks ago, it passed. And it didn’t seem like a big enough deal to investigate. It was not much worse than other “episodes” I’ve had in the past, and when I tried to investigate them before, nobody seemed to think they were that big of a deal, and I felt like an idiot for even bringing them up.

I know I’m supposed to go to the ER as soon as I suspect I’m having a stroke, but how would that work, exactly? I can’t miss work, because then I don’t get paid. And my mortgage won’t wait. I’m the only one who’s supporting my household, and if I’m out of work, we’re all pretty much screwed.

I started to get a headache after a while, last night, and I took some Advil, but it didn’t really help. I still have that headache in the front and top of my head, and also towards the back where I hit my head on Saturday.

Seizure? Stroke? Whatever. I’m sounding a little nonchalant about this, I guess, but my feeling is that this kind of stuff has happened with me so often over the years, it’s just one more thing. And even if I did have a stroke, I know how to fix my brain, and manage my issues, so I’m not all that worried. Hell, even if I do become really hampered by my brain, I know how to live my life in a way that brings me happiness and joy. I know how to bounce back and keep going, so I’ll just keep doing what I’ve been doing.

I am reminded of a number of things I need to do is stay vigilant about:

  1. Remember that my spouse is actually mentally ill. Their panic/anxiety disorder has wreaked havoc, and it is a genuine mental illness. They seem to believe that their anxiety is keeping them “safe” from whatever dangers may be out there, and the “help” they are getting from friends and their therapist seems to only reinforce their fears and their devotion to their “precautions”. They are so absolutely imprisoned by their fear about every conceivable thing on the planet, that anyone around them has to abide by their brittle rules or bear the brunt of their wrath. They feel safe when everything is going their way, but it’s absolutely smothering and restrictive for anyone who does not share their view.
  2. Underlying all this anxiety is a handful of neurological issues which are screwing with their thought process. It’s not something I can take personally, when they go off on me. I love and adore my spouse and would love to spend more time with them. Still, it’s really hard to be around them. The other thing that makes it all hard, is that I’m just about the only one who can spend any extended time around them — they’ve chased off just about everyone else with their anxious control. And they don’t understand why that is. Explaining won’t make any difference, because to them, their fears all make perfect sense — and it’s neurological. So there’s only so much explaining I can do.
  3. I need to take care of myself and get what I need for myself to stay strong. I was tired, last night, and I pushed myself too hard. I need to back off and take some time to myself, especially when I spend extended periods with my spouse. My spouse and I had gone for a drive earlier, yesterday before my outburst, and they are so anxiety-ridden about just about everything, that it’s very stressful to be around them. It’s like a never-ending drama — over huge dangers and threats which seem like they’re nothing to me. When I do the driving, they constantly boss me and yell at me about how I drive, where I should turn, what I should do. It’s a total friggin’ drain.
  4. I need to keep to a regularly active schedule. I was out of sorts already, last night before my outburst, because I was off my regular schedule. I also did not expend enough energy over the weekend and wear myself out physically. I need that. I need to keep active and tire myself out, so I don’t think too damn’ much.
  5. My spouses’ way of living is not healthy — for them or for anyone. They spend a lot of time sitting around thinking about shit that makes them crazy, and they end up pulling me into their undertow. When I am around them, they use me as a “sounding board” which just sucks me into their downward spiral. This is not good. I need to keep myself up and elevated and healthy and take regular breaks when I spend a lot of time around them.

Truthfully, I actually need to protect myself from the one person I love with all my heart. It’s kind of tough, but there it is. If I can think of it as protecting myself from the demons that are eating them alive, that’s a better way to look at it. But it’s still very painful to watch them on that downward spiral, and be helpless to do anything about it.

Having extra days off can be good, but they can be be bad, too.

I just have to keep all this in mind and take the best care of myself that I can.

My head hurts. I’m foggy and dull… and a little bit afraid of bringing up the episode last night with my neuropsych. I’m afraid of what might happen if they tell me to go to the hospital and get checked out. But at the same time, if I don’t get the help I need, then what?

On the bright side, I’ve got almost four months’ worth of pay stashed in the bank, so if I do have to take some time off, I can. My mortgage is taken care of for the next month, and I’ve got enough to at least keep going, if I need to take some time.

Ideally, it won’t come to that. But when I think it through, the fact is, I can afford to take a week (even a month) off work, if I have to. I could even go to part-time for the short term, and we’d be okay for at least three or four months.

Anyway, speaking of work, I’ve got to get going. My fingers aren’t typing very well, and I’m fortunate to work with folks who have never seen me at my peak, so they have no idea just how impaired I am, right now. I’ll just get through the day, talk to my neuropsych, and try to keep as clear as possible, so I can make the right decisions and do the right things.

Main thing is to keep chilled out and cool. I’m really bummed out that I couldn’t even make it through a weekend with my spouse without yelling and getting upset. We were doing so well… that is, I was doing so well. They were doing really shitty. But all I can control is myself. So, I have to take care of what I can control — myself — as much as humanly possible.

Screw it. Onward.

A little here, a little there, and all the while paying close attention

All those details bring the brain to life

We think too much in our daily lives. Most of us, anyway.

We read too much news that has nothing to do with us personally, and about which we can do nothing. Nothing at all.

We spend a lot of time and energy, packing our days full of activity and “achievement” and all the while we are getting farther and farther from the very things that give us satisfaction and a sense of meaning and purpose.

We move too fast, thinking that will get us more to think about and enjoy and experience.

I’m seeing that with my parents, who are on a hell-bent all-out rush to do everything they can pack into their lives — apparently wanting to get everything accomplished before they die. They’re not getting any younger, and they seem keenly aware of that. It’s almost impossible to pin them down, these days. They pick up and go at a moment’s notice  — camping, traveling, hiking, doing, doing, doing, doing….

The tyranny of a life devoted to checking off all the items on your “bucket list” is cruel and sadistic. You race and race and rush and rush, doing everything, seeing nothing, experiencing nothing, just having a completed checklist at the end.

But the simple fact of my own life is that doing less and digging in more, is far more satisfactory than packing in all kinds of hyperactive pastimes that produce far more fatigue than awareness. I’d rather stand still in one place, examining the toad that has taken up residence near my back door bug light, feeling the sun on my skin and the wind at my back, and even the mosquitoes flying around my ears… than race from Point A to Point B at top speed, just for the sake of getting there.

I’m really in no hurry.

Maybe it’s because I’m not afraid. I’m not afraid to lose, I’m not afraid to die. I’m not afraid. So, I’m in no rush.

Not today, anyway.

This, of course, is a huge change from where I was 10 years ago. Even 5 years ago. Even 5 months ago. It’s where I am right now. There’s no guarantee I won’t be wracked by fear in another 5 hours, but right here, right now, I’m pretty chill, with my feet firmly planted on the ground, and no — I mean no — fear of the unknown.

And I’m taking my time today, just soaking it all in. It’s good for my brain. It’s good for my life. Stopping to really zero in on what’s around me, having a really in-depth experience with it all… that’s the ticket.

I’m doing some reading, some writing, some work around the house and the yard. I’m moving through my days, just letting them all sink in, and enjoying them for what they are. I’ve been thinking hard about my life up to this point, and I’m feeling pretty damn’ good about how far I’ve come. Especially since my TBI in 2004. My ten-year anniversary is coming up… and I’m starting to get reflective, pensive… and extremely grateful for the recovery I’ve been blessed to experience.

It’s funny… the other day, I bumped my head as I was getting in my car. Ouch. I’ve had a little bit of a headache since, but I haven’t lost it over the whole thing. I’ve had bumps and falls, over the past few years, and they freaked me out a bit. But this time, I’ve been pretty chilled out about it. I have a sore spot on my head and a little bit of a headache, but other than that, I have no other symptoms.

I’m still paying close attention to what’s going on with me, because I don’t want to have any complications building on my past TBIs, and I don’t want to let a potential concussion go unattended. It’s all too easy to let things slide, and then end up worse off over the long term.

However, based on what I’ve experienced so far — no detectable cognitive or motor issues, no fogginess or other ill-effects — I seem to be fine.

Speaking of fine, it’s time for me to get out in this day. I have another day off work, which is fantastic. And I have a few hours before I need to head into the city to do some errands. Life is good. And it’s worth spending the extra time to pay close attention to the details.

Getting lots done is all very well and good. But in the end, I’d rather be able to remember and appreciate what I’ve experienced along the way.

Onward.