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.

Welcome new readers

I see there are a bunch of new readers here. I just checked my stats, and it looks like a handful more people are following this blog.

Welcome.

It’s been an extremely long week. The deadlines came and went, and very little actually happened on time. Fortunately (or unfortunately), I’m not the only one in that boat. A lot of people had the same stuff happen to them, and it keeps happening.

Well, whatever. I was pretty freaked out about it, earlier this week. Lost a lot of sleep over it. Then decided to let it go and just get on with my life. The only reason any of this bothers me past the time(s) of the event(s), is that I keep stewing about it and let it get to me.

Pointless.

I’m in a pretty good space, tonight. I failed to meet my deadlines. I failed to do a bunch of stuff that needed to get done. On the bright side, I also succeeded at doing a number of important things that people were depending on me for. So, all in all, it evens out okay.

It all evens out.

I’ve been thinking a lot about how I handle stress, and how I might handle it better. It’s not that my life is so unbelievably stressful — it’s just that I don’t really handle it as aggressively as I could.

I’d like to change that.

So, I’m reading up on different sorts of martial arts — just cursory, nothing active, because I can’t afford to fall and hurt myself again. I’m very susceptible to concussion, after all those mild traumatic brain injuries, and I can’t risk another concussion. So, I read up on the philosophy, or the “inner” martial arts. Breathing factors in pretty strongly, all across the board, and I’m getting back to regulating my energy with my breath.

I’m not so much of a stickler for exact form as a lot of people I read. The main thing for me is to be relaxed and ready for what’s to come — and to trust that no matter what happens, I have access to a “better me” who can make good choices and do the right thing and live by a certain “code of honor”, if you will. My code is very important to me. I can’t even put it into words — it’s just a guideline for living right, that I follow. And it gives me a sense of meaning and purpose that helps me live well.

And that’s good. Because it means being happy is about having meaning and purpose in my life, rather than needing to own or possess certain things, situations, or people.

It means I’m free.

But with freedom comes responsibility. I’m exhausted and just want to relax. Have some supper. Get to bed. And start again tomorrow.

 

Three hours off, two hours on, three hours off…

It really is a beautiful night…

I’m up at 2:30 a.m., decompressing. Things at work are mighty tense, with multiple deadlines coming, and a lot of details to cover. I have done a great job, up till now, keeping things going, and now it’s coming down to the wire, and I’m realizing that there are certain things I let slip — either through oversight or just plain laziness.

Hm. Houston, we have a problem. People are freaking out, sending emails with partial (or wrong) information, getting all worked up over this, that, and the other thing. Rather than focusing on the problems, they’re focused on their reactions to the problems, which just makes things worse. I’m not helping my situation any, either, by focusing on the lack of cooperation I’m getting from key members of my teams. I’m getting way too worked up over it — and it’s costing me time. And now sleep.

Rather than lie in bed and stew about things, I’m up and blogging. I know I shouldn’t be on my computer, because the light from the screen wakes me up, but it’s the only thing that’s getting my mind off things. I’m reading a piece in the New Yorker about “Soccer’s Concussion Crisis” and how heading the ball isn’t particularly good for you. And I think back to my youth, when I was playing soccer a lot, remembering how heading the ball used to make me feel sick to my stomach, dizzy, wobbly… and more. I didn’t head the ball that much precisely because of that. It didn’t feel right. I didn’t feel right. And in retrospect, it probably saved me from serious damage from a lot of subconcussive impacts. If it hadn’t felt wrong and if it hadn’t thrown me for a loop and made me feel like crap, every time I headed the ball, I might have continued to do it — a lot — and ended up even worse than I am now.

Not that where I am now is any picnic. In times like these, when there is a ton of stress, and it’s going to be weeks till I get any relief (because of additional deadlines I’m chasing), it helps to remember where I come from… how non-functional I was, once upon a time, and how hard I’ve worked to get to this point. The fact that I’m struggling now — with some fairly high-level challenges that are way more complicated than most people who have been in my situation have faced, four months into the job — makes me feel pretty good about things. Challenges like these are part of the job, and I just need to stick with it and tough it out, so I can come out on the other side. I just have to trust — not only myself, but my team as well, who are standing by, ready to pitch in and help me out if/when I need.

I suppose it’s a sign of progress, but I’m still bothered and a little depressed by the whole situation. I feel like I’m stuck in this limbo of stupidity — everyone at work is so tired and maxed out from the constant demands of all these projects, that poor decisions are being made all over the place, and poor behavior is following suit. I feel pretty bogged down in everybody’s “stuff” — including my own — and there’s a part of me that wants to quit and move on… do something less demanding, so I can get a full night’s sleep again.

But then, if it weren’t this that kept me up at night, it would be something else. So, leaving is no option.

I can, of course, “leave” in other ways — distract myself with thoughts of other things… projects, books I’m reading, experiences I’ve had in the past, plans for the holidays. But that kind of leaving would only make things worse.

Oh, hell. I’ll just see if I can go back to bed. I’m getting tired again, and I need to lie down. I should be able to get a few more hours worth of sleep, so I’ll give it a whirl.

At the very least, I’ll be horizontal.

 

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.

Surviving a Stroke at 33 (and Blogging About It)

brokenbrilliant:

Writing can do wonders for recovery from brain injury – in this case, recovery from stroke (acquired brain injury) by someone who has a strong online presence. I’m posting this, then I’ll go check out her blog at http://jadepark.wordpress.com/

Originally posted on WordPress.com News:

Christine Hyung-Oak Lee suffered a stroke when she was 33, and she has written about her experience in an inspiring personal essay for BuzzFeed.

Before that, she was using a pseudonym on WordPress.com to blog about her experiences, share details about her life, and practice her writing. In 2007, shortly after New Year’s Day, Lee wrote the following in a blog post:

something in my brain burped. most of what i want to do is just out of my grasp. i feel like i know how to do them, but then when i go to do them, i just…CAN’T. day by day, i’m regaining my abilities, so i hope this is just temporary.

Lee’s commenters urged her to see a doctor, and the next day, she responded to them from a hospital bed: “I had a stroke! Will be better.”

I spoke with Lee about her experience, and…

View original 837 more words

A good sign

Starting the day off right

I started off this weekend, last night, planning how many things I would do today. The parts of my projects I would undertake and finally complete — so I can move on to other things… the tasks from work that I didn’t get around to — so I can get them off my mind… breaking down the hours I’d spend in my head, so I would free up some time to do other things.

Now it’s Saturday morning, and all I want to do is go about my life in a continuous flow, not blocking off time to do anything specific, not allocating hours for one definite undertaking or another. I just want to flow. See where the day, the weekend, takes me.

It’s raining today. Gray and a little dreary. It’s chilly, too. Not the best weather for running errands, as everyone will be out and about in their fast and powerful cars (think about how much more powerful and speedy our cars are, compared to just 20 years ago), running their errands, on a mission, taking care of business, after the business work week has ended.

That’s not where I want to spend my time. Not in the least. I want to steer clear of that whole big, busy mess, and just have some peace. Just have some peace and quiet.

That’s what I want most. My spouse has been on a rampage for the past month, getting ready for this business trip. It’s been very trying, to tell the truth. Every spare moment has been caught up in them spinning their mental wheels about things that don’t actually exist. And dealing with business associates who are even more delusional than they are. What a strange thing, to see people who are so capable of living well, getting caught up in lives that don’t actually exist.

Sad.

Other sad things — a friend of a friend died suddenly last weekend. Another friend of a friend passed away from cancer that went undiagnosed for two years. A friend of a friend was raped. And a good friend of mine is struggling with health issues. Actually, a number of friends are dealing with health issues — among them, mental health. And that’s a particularly tough one, because it’s hard to know how to help.

But to get too caught up in that sadness, is a trap I can’t afford to dwell in. It’s been like a martial arts exercise, day in and day out, dealing with the depression and dementia and delusions and the plain old craziness that goes along with one human error leading to another… to another… to another… each one snowballing into a rolling batch of crazy.

Lord, yes, I do just need to take a break this weekend. I need a break from everybody else’s stuff that has nothing to do with me, really. I need to not get bogged down in the sadness that others feel… not stay caught up in others’ drama, rehashing it in my own head… not staying stuck in the whirlpool of others’ imaginary crises, spending a lot of time thinking about it. In my own life, there is no such thing, and if I weren’t living with someone who brought that to me each day, like a weird-ass soap opera, I wouldn’t even know it existed.

So, this weekend, I’m going to live as though it never did exist. Because it didn’t, outside of the imaginations of everyone involved.

I’m going to read the published personal notebooks of famous writers. I’m going to catch up on some of my own reading. I’m going to work on some of my own writing. And I’m going to live my life… let it just go, without trying to control it or slow it down or stop it. Just let it flow.

And leave it at that.

If I’m tired, I’ll lie down and sleep. If I’m thirsty, I’ll drink water or hot tea. If I’m hungry, I’ll … stop and ask myself if I’m really hungry, or if I’m just low on energy (in which case, I need to sleep), or I’m just bored (in which case, I need to do something that piques my interest). I may do some cleaning. I may clear out my bedroom and get rid of the dust bunnies. I may run out and get an air filter for my bedroom, which has a bizarre amount of dust in it. The main thing is that I’m moving at my own pace, without the intrusion of others’ delusions.

I’ve got enough delusions of my own to deal with, thank you very much.

So, it’s good.

And so am I.

Onward.