Off to the new office

We’ll see what’s inside…

Well, this is pleasant. I woke up early today, and now I have even more time, because I have a shorter commute. The pressure is off, job-wise.

Elsewhere in my life, things are heating up a bit. My last remaining grandparent, who is over 100 years of age, is in failing health, and my parents think they will not last long. This grandparent has been the single-most strongest presence and role model in my life, and I would probably not be here without their example. We haven’t always seen eye-to-eye, and there were many years when we kept each other at a distance, but that’s all behind us now.

Now there is only love and respect. Time heals.

So, I may have a trip ahead of me later this week. I have some critical deadlines looming, so I have to have a backup plan, for sure. I need to organize things and make sure they are in order, so I don’t miss the important dates coming up. I feel good about where I’m at, and how I’m handling things now. I’m getting the hang of the scheduling we do, and it’s falling into place.

I just needed to go through out, have some sketchy experiences to make sure it all sinks in, and keep going.

I’m seeing my neuropsych later today, also. I have prepared for the meeting, collecting notes from my past week, because for the life of me, I cannot seem to remember — when I get to their office — what I wanted to talk about. I’ve put together a list of topics that are all in my head and area all factoring into my life right now, to make up my whole experience. I’m hoping that will help them understand my situation better, because what I end up talking about is just a very small, small piece of the whole picture for me, and how can I get help with what is really challenging me, if I can’t articulate it.

I’m tired of being upset and frustrated over the whole process, and I’m concerned that they think I’m in a different “place” than I really am. It’s not that everything is awful, or that I’m debilitated or disabled. I just have certain things that are really intruding in my life, and I need to figure them out — clearly and plainly, not in a roundabout way.

So, there it is. We’ll see how it goes. I get a little tired of the disconnects between how I’m feeling, how I describe my experience, and what others interpret from it.

And I’m doing something about it.

Onward.

Where recovery happens

Writing has a way of getting me where I want to go

Reading “The Woman Who Changed Her Brain”, I have been thinking a lot about how I’ve managed to bounce back in my own life and rebuild / rewire my own brain. Life after TBI is absolutely strange. I haven’t recognized myself for years, and I thought for sure I was gone for good.

But I’m not. I’m still here. And I’m feeling more “back” than I thought I ever would or could.

So, where does that happen? How does it happen? I’ve gotten some great help from a neuropsych over the past 5 years or so, but to be honest, for all the progress they’ve seen me make, they probably don’t have a clue about what all goes on inside my head. How could they? When we talk, I feel so incredibly slow, and half the time, I can’t seem to get the words out that I want to say.

It. Is. So. Frustrating.

It’s maddening. But they don’t seem to understand that the things I want to say, aren’t getting through.

And then I become so frustrated with myself, so fed up and overwhelmed… that I just say what sounds good at the moment and keeps the pace moving. I sound quite confident, because I know how to project that. But inside, I feel like I’m dying.

Good grief. It’s really bad, some days, but I don’t have the heart (or the energy) to slow things down and make it clear that I am not really following, that I haven’t understood a word they said, and I’m sitting there nodding and looking all “with it” — without a clue about what we’re supposed to be talking about.

For someone who has always considered themself quick and sharp, this is pretty dispiriting. I mean, I’ve always had trouble understanding people, but I’ve never felt this slow before. I could always engage in witty banter, during my teen and adult years, before my TBI in 2004. After that, nothing was funny, and I couldn’t muster the quickness to parlay and banter about.

It just feels so slow. And I don’t know how to describe or explain it to my neuropsych. It bothers me so much, I want to cry. But I can’t cry with my neuropsych, because when I break down, I feel terrible and I have a hard time functioning. I get overwhelmed, and that’s no good, when my neuropsych is located 25 miles from my home. I have to be able to drive home.

I just don’t know what to do. Maybe I need to write them a letter and explain the situation. I’m not sure that will help. I’m not sure they’ll believe me. But something tells me I need to at least try. Draw them a picture. Something. I just need someone to witness in person the stuff I’m going through and understand … even if I don’t look like I’m struggling. Even if I’m covering it all up really well.

The thing is, I am recovering in so many ways, and that has really happened here – on this blog – where I can “speak” my mind and not worry about repercussions. Writing is so much easier for me than talking. Talking gets me turned around, and it’s hard for me to pay attention. I hate discussing things and “working them through” with people. So much gets lost in the translation. So much wasted. So much missed. I just give up after a while and let them think they’ve “won”. I can’t seem to keep up with the flow of conversation. I need a better way to communicate — at least with my neuropsych.

Eh… I’ll figure it out.

Or I won’t. And I’ll keep blogging, keep writing, and keep on with my recovery. Whether or not my neuropsych “gets it”.

Onward.

Hard-wired for success, failure, and everything in between?

We all have some sort of resilience within - I have to believe that

We all have some sort of resilience within – I have to believe that

I had an interesting discussion with my counselor last night. To be truthful, this individual has been very helpful to me, but they also have some severe limitations — such as their outlook on life. I was discussing resilience yesterday, asking aloud why it is that I’ve had so many situations where I had the bottom fall out from under me, yet I bounced back… when so many other people have less awful things happen, but they never fully recover.

Why is that? I think it’s a valid question that needs to be explored more fully.

My counselor told me that, after all they had seen while working for the state social services department for many years, they believed that some people are hard-wired for resilience. Some people had terrible things happen to them, and they recovered, while others did not. And they were just built that way.

Thinking about that, it’s probably one of the most depressing things I’ve ever heard. And it’s definitely “old school”, harking back to the days when people believed that you had what you had in terms of luck and life and cognitive ability, and that was that. Pretty antiquated, if you ask me. Of course, I wasn’t going to argue with someone who was working “in the system” for decades and is over 70 years old, and they have their perspective — their story — and they’re sticking with it.

I just can’t get on board.

See, I don’t think that’s true at all. I believe that people can change — they change all the time. And the people who are “stuck” have as much of a chance of getting “UNstuck” as the next person. Of course, there are going to be extreme cases, where dynamite wouldn’t dislodge them from their misfortunate mindset. But the vast majority of people have an inborn — IN-BORN — capacity to change.

Hell, we change all the time. We change our minds about things. We learn new things. We get bored by some things and drop them, and we get excited by other things and jump in feet-first. We make friends, we lose friends, we change jobs, we move around. We are in a constant state of flux and change at all times in our lives; we just normally don’t think about it, because change is really a regular part of our lives.

And then there’s the unanticipated change, that blindsides us and doesn’t make any sense to us in the grand scheme of how we understand our lives and ourselves.That takes some work, to get back. Sometimes we make it, sometimes we don’t. Sometimes we end up turning into someone we don’t recognize. But we do change. We can’t help it.

TBI is the kind of change that takes us by surprise. Nobody can probably EVER anticipate the changes that happen when the brain is rattled, shaken, and reshaped in subtle, miniscule ways. Recovery from that kind of hit is different from just about any other kind of change, because the very thing that’s the central controller has been impacted. Certainly, with cancer and chemo-brain and other kinds of injuries and illnesses which impact the brain as well as the body and spirit, you’ve got that brain stuff in the mix as well. The thing is, with TBI — especially with mild TBI — it’s so damn’ hard to figure out what the hell you’re supposed to do, how you’re supposed to do it, and understand what’s going on.

The thing that probably makes it different from other types of illness, is the hidden aspects. Absolutely, there are many people who are struggling with hidden illnesses, yet with TBI you’ve got the perfect storm of disconnects between where you’re hurt, how others perceive you, and how you can heal.

And yet, we can heal. I’m healing. I have my setbacks, my bad brain days, my times of going a little bit nuts over things that are bothering me in the back of my mind. But I’m healing. And overall, my situation is vastly improved over where I was, just a few years ago. Make no mistake, it’s taken constant work. It’s been exhausting. There are no “days off” in this process, but at the same time, quality recovery is practically impossible without some sort of rest and recuperation. It’s a balance.

And I wonder what it is that has made my recovery so much more… effective… than probably anyone would have guessed or anticipated. I know my neuropsych is kind of amazed at the recovery I’ve made, and how … functional… I am in my world. I’m engaged. I’m social. I’m involved. I’m out of debt for the first time in over 20 years. (I’m also usually exhausted, but that’s the price you pay, Oh, well. At least I’ve learned how to build it back up.)

I also wonder how it is that I’m able to bounce back from extremely dark times, and rebuild the way I do. Money problems. Marital problems. Health problems. Exhaustion. Work difficulties. Losses of friends and loved ones. Dark nights of the soul, when it seems nothing will ever get better, and I’m seriously wondering how much longer I have to keep on living. Ultimately, this all passes. And I’ve found that the more quickly I engage the darkness on its own terms, just letting myself feel as badly as I do, just letting things get as bad as they can, the more quickly I can bounce out of my sh*tass state of mind.

What makes that possible? What lets me do that? Is it just how I’m hard-wired? Is it just how I’m built?

I find it hard to believe that I’m just built that way, because in years past, I have been so down, so low, so desperately depressed, nothing could drag me out. For so many years in my childhood, youth, and adulthood, I was in an extremely low state of mind. And looking back at who I was, once upon a time, nobody — but nobody — would believe it was the same person.

And if the people around me were looking forward to right now, probably nobody would believe that I’m the same person that I once was.

Some say it’s all about character. I say, character can be learned. It can be taught. It can be modeled. And the fact that I’ve had so many positive role models in my life, whom I really respected and looked up to, I believe has had a huge impact on me and my life.

I wish I could write more about this, but I’m running out of steam.

Bottom line is, I don’t believe for a minute that people are truly hard-wired to be one way or another. We change. We change all the time. It’s how we’re built and what we do naturally. We just have to figure out how to change in directions that help us, rather than make us (and everyone around us) miserable.

Well, the day is waiting. It’s my last day at the old office, and it’s going to be a good one.

I don’t just know it will be — I’m going to make it that way.

St. Barbara of Arrowsmith-Young

Thanks for the help this past Sunday

So, on Sunday I spent the afternoon reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain”, about how she learned how to identify the underlying issues beneath her severe learning disabilities, which had made her life a living hell for 26 years of her life. I found the book for free on Scribd.com — my new favorite place of all time. You can read the book for free here: https://www.scribd.com/book/224350322/The-Woman-Who-Changed-Her-Brain-And-Other-Inspiring-Stories-of-Pioneering-Brain-Transformation - you just need a free login.

Anyway, I am finding a lot of similarities between her situation and mine, despite obvious differences. And it occurs to me that after hearing a number of accounts of her hitting her head (running into things, banging her head before she started to study, etc.) TBI might just factor into her account. She focuses on the learning disabilities parts, rather than the root cause, so that makes the book more accessible for folks who have had any kind of difficulty with learning and understanding and communicating — me included.

One section in particular jumped out at me yesterday:

I recall a twelve-year-old student with average intelligence but whose severe weaknesses in both the left and right prefrontal cortexes left her as compliant as a young child — so compliant that other children would toy with her and order her to stand and sit on command or to stay in the schoolyard long after recess was over or to surrender her Nintendo game. Her neurological weaknesses had robber her of her ability to evaluate a command and decide whether it should be obeyed. She addressed her problem areas and eventually was able to say no.

That’s pretty much me — but in very different kinds of situations. I didn’t have a problem with being compliant and going along with others as a kid. If anything, I was defiant and went against what anyone and everyone told me to do (except for my love interests — they could always boss me around).

The compliance and obedience and lack of questioning happened in adulthood. And I wonder if the three car accidents, the fall off the back of the truck, and the occasional head-banging — all in my early adulthood — might have affected my prefrontal cortexes to the point where I would just compliantly do whatever my spouse told me to do.

If that’s the case — and my compliance has been neurological, rather than emotional or character-based — then that’s a huge relief. And it means I can do something about it. For close to 20 years, I pretty much went along with whatever my spouse told me to do. It wasn’t so pronounced in the beginning, but then it got worse.

I had a car accident in 1997 where I was rear-ended, and I couldn’t read for several days. The letters swam on the page, and I couldn’t concentrate on anything. I recall feeling weird and shaky and being a bit “off” for some time after the car accident, and I wonder if maybe that affected my prefrontal cortexes and made me more compliant. People around me thought my spouse was bullying me, that they were being abusive and domineering, but honestly, I just went along… because it was the only thing that seemed useful to me.

I need to check around to find out more.

Anyway, that’s just one part of the book that I’m really enjoying. There are a number of different places where I recognize myself — the hesitance, the inability to get things done, the self-regulation problems… I’m not sure I want to think about them in terms of learning disabilities, but rather brain capabilities. And they apply to all kinds of situations, not just educational ones. That’s something that the author talks about a lot — how addressing these learning disabilities will improve functioning in the rest of life.

What Barbara Arrowsmith-Young has done is remarkable. She’s really figured it out — and from the inside, not from the outside. It’s amazing. I’m a huge fan, and if I were religious, I’d recommend her for sainthood. Her story is one of the reasons I got myself into neuropsych rehab, in the first place — when I read Norman Doidge’s “The Brain That Changes Itself” her story stood out for me more than any others. Because she took it on herself, and she did the work, instead of having someone else do it for her. And now she’s passing it on to others. She does public lectures. She has her Arrowsmith School. She’s written a book.

Unfortunately for me (and probably many others), the Arrowsmith School is expensive. And it’s in Canada, which is not an impossible distance from me, but still… I have to go to my job each day, I don’t have a lot of money to spend, and I’m thinking there must be another way to get this kind of help without being locked into a specific location, or paying someone to get me on track.

Again, I come back to living my life as the best recovery. Living fully and reflectively. Mindfully. Engaged. All those catchwords that basically say,

Do the best you can each and every day…

Be honest with yourself about what’s going on…

Learn from books and movies and the world around you, your experiences, your teachers and your mistakes…

Change what you can so you do better next time…

And share what you learn with others.

Absent the resources to enroll in the Arrowsmith School for months (if not years), and with the help from a handful of competent professionals, I seem to be making decent progress.

Speaking of which, I’ve got some chores to do.

Onward.

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.

A whole new me shows up

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

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

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

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

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

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

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

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

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

Geez, what a pain in the ass.

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.