concussion now i’m stupid

Someone visited this blog yesterday with the search “concussion now i’m stupid” and it seems like it’s in the air.

I had a great day Saturday — I had a very social day, and I was out and about in town, which rarely happens with me. I either don’t have the time, or I don’t make the time, or I find a hundred other things to do that are more interesting than interacting with other people in a city.

But Saturday, I took a bunch of chances, and I had a ton of interactions that were really positive and encouraging.

Sunday, on the other hand, was a huge challenge. I wasn’t able to rest as much as I had wanted/planned, and I was really feeling the effects of all the exertion on Saturday. Even if the exertion was good and positive, it was still exertion, and I didn’t remember to rest.

One of my big problems is, when I get over-tired, I often forget to self-monitor. That happened to my yesterday. So, I ran into trouble.

With a Capital T. Had a huge meltdown yesterday. As in — rage and tears and being stuck in a loop of anger and shame and frustration and resentment. I hate when that happens. I could feel it coming on, and I thought I could stop it, but I couldn’t. It was like a repeat tsunami of unwanted overwrought emotion. Waters pulling out, then washing in and wrecking everything in its path. Emotion pulling out, then rushing back in and leveling everything in its way.  It came and went for about three hours, and it totally screwed me up — and my spouse. Not pretty at all. And I’m still “hungover” from it this morning.

Ugh.

Looking back on things with a less emotional eye, one of the things that complicated my situation yesterday was that insidious little voice in the back of my head that managed to find everything I’d done “wrong” on Saturday, amplified it about a thousand times, and then commenced to tell me You’re So Brain-Damaged and Stupid. Who would ever love or care about you? You’re such an idiot – you had a concussion — no, wait, you had a bunch of concussions – and now you’re stupid. You’re so stupid you don’t even know how stupid you are.

Stupid.

Well, you get the idea. And sure enough, as always happens when that voice gets going, before long, I was at war with the world, at war with myself, at war with my spouse, at war with my job, at war with everything and everyone who came anywhere near me.

concussion now i’m stupid…

My thinking is too slow, I’m not sharp and quick like I used to be, I’m not even funny anymore (and I used to be a laugh and a half all the time), and who would want to bother with me?

Geez.

It’s bad enough that I have to contend with the physical and logistical issues, but when that voice gets going… well, the only thing to do is go to bed.

I managed to do that eventually, but not on my own steam. I had to be guided to bed and put away like a cholicky baby. I friggin’ hate when I’m reduced to that. But when I’m in the midst of that storm/tsunami, I cannot for the life of me pull myself out.

For future reference, I need to keep the image of the tsunami in my mind, when I feel it coming up. So I can get to higher ground. Tell my spouse I need to take a break, and remove myself to my bedroom or study, to simmer down. Just get myself out of the way of the wave. Maybe go out for a walk in the woods. I did that yesterday at the end of the day,  and it helped tremendously. Yes, the walk in the woods — climbing up to the top of the nearest big hill — helps me a whole lot.

I also have to have a talk with my spouse about this TBI business – it’s not okay for them to talk to me like I’m an idiot, which is what they’ve been doing more and more over the past year. Apparently, they seem to think that because my memory is a bit spotty at times, and my processing speed has slowed, I’ve lost my innate intelligence. Either that, or they have always acted this way, and I’ve just recently stopped allowing myself to be intimidated into hiding my issues from them. That’s always a possibility.

So, there are three main issues I am contending with — the wave of emotion that cannot and will not be stopped and can only be avoided until it calms down… the voice in my head that tells me I’m stupid… and the voice I live with that tells me I’m impaired. The first one, I just have to be mindful of and learn to avoid being swept away. The second one, I have to either ignore or actively argue with. The third I have to have a serious talk with — and possibly involve my neuropsych to explain to my spouse that my relative weaknesses are manageable and don’t mean I’m reduced to a simpleminded shadow of my old self. Some days it feels like that — like yesterday — but it’s not the truth of the matter.

But ultimately, the bottom line is, here’s the #1 Lesson I (re)learned over the weekend:

I have to pace myself. If I have a big day, even if it is a really good big day, I need to take the next day OFF and SLEEP. Rest. For real. Nothing else matters. No distracting entertainment is worth the price I’ll pay for exhaustion.

Better Living Habits to Help My Brain Work Better

This just got posted as a comment at  my post about confabulating as a kid

1. You can get away with treating your brain pretty badly and it still works okay, as long as you don’t have a head injury. That rule changes dramatically after a head injury. The brain malfunctions under any kind of unfavorable operating conditions.
2. For example, if you skip breakfast and eat fast food for lunch, expect your brain to get sluggish. Having a healthy breakfast, including some kind of meat or other protein, is strongly recommended.
3. You should not subject your brain to any kind of nutritional deficiency. That means drinking plenty of water, and avoiding starving yourself.
4. There are many theories about nutritional effects on brain function that recommend avoiding sugar, white flour, or both. These are major ingredients in fast food. Although science has not reached agreement that eating a diet which is heavy in fruits and vegetables, whole grain bread, and healthy sources of protein (fish and chicken) helps your brain to work better, enough nutritionists suggest this kind of diet to make it worth considering.
5. Lack of sleep is a major source of reduced brain ability, especially in people who have had head injuries. To the extent that you can do so, you should make sure to get enough sleep. If you have difficulty in sleeping, this topic will be discussed in an advanced chapter.
6. If your injury makes you prone to getting tired, there are “energy management” techniques that allow you to make best use of the capacity you have.
7. Try to do your most difficult and important work early in the day.
8. Try to avoid working under tension as much as possible, as that burns extra energy.
9. Try not to do one kind of activity for long periods of time. Switch off from one activity to a completely different kind. For example, after reading something difficult for half an hour, switch to doing dishes or gardening. When you do this, you stop draining the last chemicals out of the reading systems of your brain and start using other, different systems. Switching activities like this can allow you to get a great deal done without getting completely exhausted.
10. If there are stresses where you live or spend time, work on reducing those stresses. For example, after living or hanging out in a messy room for a long time, some people find that it actually reduces stress to straighten it up. If your living area is infested with bugs, and that bothers you, take steps to get rid of them. Any reduction in stress is likely to make everything work better.
11. Getting some physical exercise every day seems to help the brain to work better.

Remind me to never do THAT again…

Over New Year’s Eve, I went to a firewalking ceremony. Some friends of mine are into walking on glowing coals, and they said it would be a good experience for me to have. Personally, I was more interested in a bonfire than walking on coals, and I didn’t actually intend to “do the walk” with everyone else. I didn’t intend to sit through the little presentation that was offered before everyone walked, too.

But by the end of the evening, I had sat through the presentation, broken a board with my bare hands, and walked across glowing hot coals. By the wee morning hours, I was high as a kite. And now I’m paying for it. Big time.

Because as much as I enjoyed staying up way past my bedtime.. and as much as I enjoyed the company of the folks I was with… as powerful as I felt as that board snapped under my hand… and as much of a thrill as I got from walking barefoot across glowing coals… the benefit was short-lived, but the gut-churning after-effects are still with me.

See, one of the goals to the evening was “getting rid of old stuff that is holding you back.” Breaking the boards and walking on coals were supposedly for breaking free of limiting patterns and getting rid of untrue self-talk. The intention was to symbolically shatter misconceptions about ourselves, as well as find out we could do things we didn’t think we could. And that’s fine. We can all use that. My argument has to do with the depth, breadth, and scope of the changes we were supposed to experience, and the lasting effects on me, in light of my neurology.

I got the impression from the person leading the firewalk, that they considered firewalking a way to completely let go of “old stuff”… to break free from self-limitation, and step into a whole new way of being in the world for the new year. That’s fine, but did they honestly think that a single evening could erase a boatload of trauma for participants, just by breaking a board and walking on coals? They seemed to think so. And they really pushed participants to “get in touch with whatever is holding you back,” which included everything from things people had said to us that were untrue, to ideas we had in our heads about what we were capable of doing. It was a lot to compile. And it was totally overwhelming.

Now, maybe it’s possible for neurotypical people to do this sort of thing — list out a bunch of ideas they want to change about themselves, and then symbolically sever their “connection” with those old stories, and have their lives change for the better. But for this particular individual, the prospect of overcoming neurological, physiological, psychological, and emotional issues (many of which are intertwined, and are perpetuated in a complex cause-and-effect waterfall/chain reaction that is hard enough to track, let alone fully understand) in the course of one evening, seems a bit of a reach.

Some people left elated. Others left despondent (because their issues wouldn’t budge). Others took it all in stride and disappeared into the new year. I started out elated that I’d been able to do the things I’d done, but by this afternoon, after I’d woken up from my extended lie-in, I started to feel downright crappy.

‘Cause my “issues” aren’t quite that easy to dislodge. And I felt sort of the same way after the firewalk, that I used to feel after therapy — like I was supposed/expected to have some breakthrough by identifying my problems, but the waters just got more muddied, the more I contemplated my issues. It didn’t help. It made things worse.

With me — and countless other MTBI survivors — the emotional aspects of life are complicated by neurological ones… and the emotional aspects often camouflage the neurological sources of one’s problems. And the more you hammer away at emotional issues, tring to banish them without addressing the underlying neurological sources, the worse it makes a person feel, who’s seeking relief from emotional distress.

And the more today went on, the worse I felt. Because I was/am tired. Totally wiped out, to the point of not being able to think. And I’m also revisiting all those ideas and scenes and concepts we were focusing on last night that I supposedly overcame, unable to filter them and parse them all out, ’cause I’m so tired. I’m all for personal transformation, but there was something prefunctory and a little presumptuous about that firewalk experience. The more I think about it, the worse the taste in my mouth.

Okay, true, it’s been less than 24 hours since I got home from the shindig, and the emotional hangover will probably wear off before long. But still, the whole experience doesn’t sit right with me, and I feel a bit “behind” today — not rested, not rejuvenated, but tapped out and taxed.

I’m going to bed.

I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

Feeling normal. Normal is good.

Back from Thanksgiving for real, now… Back in the swing of things at work, where everything is going crazy for year-end. They had another round of layoffs at work, but I was magically spared.

I’m pluggin’ away at my new job, rallying back after what was a less than stellar review of my first cut at the project I’m working on. Must be smart about this. Will be smart about this. Will use fewer pronouns, so I think faster 😉

But I’m tired. Tired and ready to just relax. After my 10 p.m. call tonight, when people overseas complete a job I asked them to do, and I check their work.

Still digesting Thanksgiving time. And trying to find space in my schedule to just take a break. One of my coworkers stopped by earlier today, saying they didn’t have enough work, and they were just occupying themselves with other things. I wasn’t sure what to say. I’d give anything to have less work — but this way I’m safe(r) from layoffs, I guess, which is good.

The main challenge I’m facing today, is accepting the fact that I had a normal Thanksgiving and I’m having a normal life. A normal life with average expectations. It’s to be expected that this new line of work will tire me out. And it’s to be expected that I can share time with my family and not melt down or lose it or freak out on them. It’s to be expected — today, anyway. In past years, not so much.

So, I’m tired, yes, but I’m still grateful. I’m grateful that I am having a normal life, with all its ups and downs. I’m grateful that I had a good time with my family. Most of all, I’m grateful that I am actually feeling normal. What a change this is, after 40-some years of NOT feeling normal.

I think I’ll celebrate Thanksgiving through the end of the year.

Alicia – A film about a brain-injured woman

I happened upon this film (broken up in to segments) about a brain-injured woman from Australia.

Seven years earlier, an 18 year old woman, ALICIA was seriously injured in a car accident. It was her brain rather than her body which suffered.

This documentary tells the story of her long journey of recovery. Not content with just regaining a ‘normal life’, Alicia pursues her original dreams of becoming an actress. Through Beth, the main character from Sam Shepard’s play ‘A Lie of the Mind’, Alicia is able to express the common experiences of brain injury, her alienation from society for being different and her lack of inhibitions.

Flashbacks, dreams, Alicia’s video diary, interviews told with heart and extraordinary honesty by her family, friends, medical practitioners, healers and theatre colleagues; all contribute to unmask and reveal the many faces of Alicia and explores the issues confronting everyone involved with acquired brain injury. ( http://www.stellamotion.com.au)

Watch and learn

I’m sorry… I think?

I’ve been thinking a lot about my reaction to the post about the BIA booting a blogger from their conference. And I’m wondering if I should regret my hot-headed reaction.

On the one hand, I have received tremendous help from the BIA in some respect. On the other, I have heard stories like this — and other accounts, where people were actively discouraged by the BIA from saying that you can recover from traumatic brain injury.

It’s a mixed bag. As most things with people are.

The thing is, though, the Brain Injury Association is more than a person. It’s a collection of persons which professes to assist other persons. And as such, if it’s going to truly assist, I would think they would welcome the presence not only of a member of the press but also someone who has been impacted by brain injury.

Or maybe they’re wary of brain-injured folks in general, knowing what they do about “us”…?

Who can say? One of the things I’m taking away from this is yet another reminder of how hot I can get on short notice. And it warns me to check myself periodically, to make sure I don’t go off the deep end. It reminds me I’ve had multiple concussions, multiple mild traumatic brain injures… and as such, I owe it to myself and to others to measure my responses carefully, and weigh the possible effects/consequences, before I let fly.

I had considered taking down the post from before, but it’s a valuable learning/teaching lesson. So, I’ll leave it up there, warts and all.

What she said… about never giving up

Over at Unsolicited Advice, this wonderful pearl of wisdom about TBI survivors:

What these men, women, and children need is for us to believe in them. They need for us to know that they can recover. Obviously, there are varying levels of severity among brain injuries, but most patients can see at least some improvement if they work at it.

If someone feels like everyone has given up on him, he often stops trying. This is a very dangerous situation for a brain-injured person; because of the brain’s amazing plasticity, it seems that the more a person does, the more he can do.

We must expect that brain-injured persons will recover, at least to some degree, rather than telling them they will never function again. We must talk to them as though they are still people, even if they don’t understand what we are saying at this moment. We must respect them and remember that their stories began long before the injury. They had a life full of promise, just like the rest of us, and can again; but they need our help. We cannot give up on the brain-injured community!

I’ll second that.

I’ve been stewing over my worsening experiences in therapy, today. The day has been a productive one, and I’ve made tremendous progress with tasks I started earlier in the week and struggled with for several days. But in the back of my mind has been lurking this simmering frustration over my psychotherapist’s apparent decision that I’m too impaired to be repaired.

Please note, I am very wary of this being the impending holidays approaching that’s mucking with my head. The holidays are often difficult for everyone, psychotherapists included (I would think, especially them, because they have to serve a client base that’s even more in need of help that most people — and even the most “regular” amongst us gets a little squirrelly at this time of year).

But when I think back on the exchanges I’ve had with them, it hasn’t just been the past few weeks that have rendered comments that suggested I wasn’t up to the task of doing my job, or advancing my career, or sustaining my marriage, or keeping my house, or having the standard of living that I am accustomed to. Those comments have been peppered throughout our conversations, and I think it’s finally just reached a breaking point with me. It could be that, rather than being a burdensome strain on me that’s taxing my ability to reason, the holidays are actually clarifying a lot for me and bringing into very clear focus what I will and will not tolerate in my life.

Being dismissed and diminished by someone who doesn’t seem to want to really get to know me or listen to what I have to say, is not the kind of experience I want to continue in my life. It’s just so debilitating. And it makes you want to give up. Just going through a 50-minute session with my shrink, who winds up the time trying to get me to accept that I’m just not good enough, anymore, is enough to make me want to crawl under a rock.

But I’m not going to do that. I’m going to buckle down and work all the harder. I’m going to follow through and make good on my promise. I’m going to do everything in my power — head injury and all — to live up to my potential.

And so I think about what this woman wrote, and I am comforted that at least one person in the world (other than my neuropsych) can see what we need, and is willing to offer it to us.

Treating TBI

Treating traumatic brain injuries @ the LATimes

They can’t be set like a bone or staunched like a bleed. They can be difficult even to detect, but the military and others are working to improve care.

Larry Ewing’s life changed last year on a construction site in Victorville; Larry Carr’s changed in 2004 on a road in Iraq. Unlikely brothers in arms, both men now share the same invisible wound — traumatic brain injury.

They tire easily, forget often and lose their balance and concentration without warning. They struggle to make peace with personality changes that have made them barely recognizable to loved ones.

Read the whole story here

Reaching out… reaching in…

Something in me wants like crazy to reach out, to make contact, to connect with another human being on a level that has absolutely nothing to do with anything we know about each other. Not our strengths, not our weaknesses, not our issues, not even our victories.

Something in me craves the kind of connection you can only get with total, utter strangers… the kinds of people I feel most comfortable around, who know nothing about me and will never learn anything more about me, than what the moments we share have to offer.

There’s something clean in that, something pure. Something unadulterated and untarnished. There’s something divine. Utterly, inexpressibly divine.

A weird beetle is flying around my room. It’s been warm, the past few days, and the bugs are coming out again. Grass is growing again, despite the late date. This bug has been in my study for the past day or so, buzzing around, climbing on my curtains, inching closer to one of the three lamps I have on to light my workspace… to light my way.

In some ways, I feel closer to that beetle than I do to many people. It’s an ugly thing, really. Not very attractive, and sort of prehistoric looking. There are lots of them around my place during the spring and late fall. They gross out my spouse, who can’t stand dealing with them, but there are so many of them around, you can’t avoid them. But every encounter I have with them is pure and clean and straightforward: You are in my home. You will not find anything interesting to eat in this place. You should not be in my study or my bathroom or my hallway. You need to go outside, and I am going to take you there. Now.

End of contract. End of story. And no one has been hurt in the process.

How unlike my human exchanges.

I had a very probing session with my psychotherapist today. I suspect they think that I am making up my issues to “game” the system and get money out of someone. I suspect they think that I’m misleading my employer and overstating my abilities, because I need the paycheck. I suspect they can’t quite believe that someone with my history of head injuries can possibly be as functional as I am. I haven’t even told them about the other two from my early childhood that I remembered recently.

My session brought up issues that I have frankly not dealt with, about how I relate to my immediate family. The holidays are upon us, so what better subject for a shrink session? And now I am feeling sick, because the impact of some Very Bad Things that have happened since my fall in 2004 never really sank in.

Until now.

This, I suppose, is the price of increased awareness — increased awareness and sensitivity to all the crap that tends to fly about. Disturbance and distress and falling ill with nervous exhaustion. There we have it.

Part of me wants to crawl back in my cave and not sweat the big stuff that goes on. Part of me wants to go back to pretending that everything is just fine, and that my options in life are unlimited. Part of me wants to go back to not being therapized on a weekly basis. Part of me wants to just get on with my life. But then, there are Very Bad Things that need to be dealt with.

So, I guess I’ll just deal with them. Like all the other crap that comes across my path.

I’ll just deal with it. All of it. And make sure I get enough sleep and take my B vitamins.

Don’t forget the B vitamins.