More clarity – yes, more clarity

clarity-of-thoughtSo, I posted a TBI injury and recovery story from a reader, the other day, and it seems like a lot of people think her story is mine. Not at all.

Well, of course, there are some similarities, but it’s her story, not mine. I’ve just gone back and updated it with a notice at the very top and quotes around the story — it was easy to fix.

I wish all misunderstandings were that easy to fix.

I’ve also been fielding some comments in Twitter about things I’ve said, that apparently came off wrong. It is really, really easy to be misunderstood on Twitter. I’ve had people thinking I was attacking them, or their sport, or something else they held dear… and then they “fought back” with both barrels blazing, when all I was doing was raising some questions.

All around, it seems like the online world is just primed for misunderstanding — and consequently, a fight. All around us, we are trained to see opponents and aggressors. And that’s a huge problem, when you can’t even disagree with someone and/or challenge their thinking without being seen as an aggressor (or micro-aggressor). There’s a fantastic article in The Atlantic about this (click here to read it), which I came across a while back. It explains a lot — especially with regard to the younger generation who seem to have amazing potential, but also seem incredibly hung up over every little thing.

All the fighting… good heavens. There’s a reason I backed off Twitter for a while. But there’s so much good research coming out that gets posted there, I have to check it out. There’s seriously some great reading available, thanks to all the tweets flooding my feed. I think the key is to not follow a lot of people who get snarky and vicious and outraged. Especially about politics. ‘Nuff said about that.

Anyway, I’m taking more time to think things through before I say / post / tweet them — or trying to, anyway. It’s hard, when the moment to respond presents itself, and there’s something in your mind that seems 100% appropriate and on-point.

I should know by now that that feeling of 100% certainty is a tip-off to the exact opposite being true. The more convinced I am of something, the more likely I am to be very much mistaken. So, I do know that. But that doesn’t always rule how I react and interact. Impulse control issues and all that.

I guess that’s what keeps things exciting. I just have to keep revisiting things that need a little tweaking… making sure I don’t do more damage along the way. I also need to know when to let it go. Not everything needs to be fixed the way I want it to be. It’s also important that I hold my ground and not give into bullying. Just state my case, say my piece, and leave it at that. If people understand, then great. If not, there’s no guarantee I’ll convince them.

Sometimes it’s best to just move on and leave it at that. Or just stop following some people… which I have been doing regularly, when their tone gets too unremittingly intense.

Anyway, it’s a new day. It’s Saturday. I have some time to myself today, and my headache has abated somewhat. I’ve got some reading I want to do, as well as some thinking. “Tinkering and thinkering” as I’ve heard it described in something I read recently. I’ve always got to be careful when I have free time, because I can very easily get carried away in all sorts of distracting directions.

Last week, I was caught up in researching mind-control techniques of expensive large group “personal growth” programs… and a week before that, I was caught up in some fringe neuroscience that is so far beyond me, it became apparent after two days of compulsive reading that I couldn’t even scratch the surface enough to wrap my head around the name of the phenomenon. Admittedly, it is good for me to range a bit farther afield in my reading and studies, but I can get too caught up in too many fringe activities, and then I lose valuable time for the things that I really do want to work on.

Like the handful of books I’ve started to write and got 3/4 of the way through, but are all waiting for me to pay attention to them again, so I can finish them up.

Anyway, today is different. I’m not feeling great — and ironically, not feeling great is a key factor in how well I am able to focus. When I’m feeling rested and fully functional, I get pulled off base very easily — all that energy gets spread too thinly — and I get nothing done.

But when I’m not feeling great — I’m at maybe 65% today — I know I have to be more deliberate in my activities and pick and choose. So, more gets done. And oddly, I have more clarity when I’m under the weather, than when I’m feeling at the top of my game.

I wouldn’t mind feeling just a little better today. Who knows? Maybe I will by the time the game is on this afternoon. I’ll pace myself. Take naps when I need to. And pick and choose the things I want to do.

That should be good.


A good night – about to get better

Had a very pleasant evening with a bunch of friends tonight. Ate good food, talked about old memories and shared stories that we had somehow never told each other before.

Good times.

Now I’m home – my spouse stayed behind to catch up some more, while I came home to rest. We’ve been driving separate cars to common events for some time now, because there are times when I . Just . Run . Out . Of . Steam.

Tonight is one of those nights. While everyone was still going strong, I said my good-byes and ducked out. Got a few miles down the road before I realized that I’d forgotten something, turned around and went back, chatted a bit more, then finally made it home.

I had a really nice ride home. The night was clear and cold, and for some reason tonight just looked so beautiful. Maybe it’s all the Christmas lights. Maybe it’s because I don’t have to go to work for another week and a half. Maybe it’s because I gave myself time to get going, so I don’t have to bump up against the rough edge of my limits later on. For whatever reason, it was a beautiful drive, and I took my time coming home.

Now I’m having some hot lemon water to help with my cough, and I’m winding down … getting ready to hit the hay. This is good – much better than being crazy rushed and forcing myself to hang around and be the life of the party. I really like my friends. I also like getting a good night’s sleep.

The wind is up tonight. It sounds like a wild animal prowling around the house.That’s fine. It can prowl. I’m taking a shower and going to bed.

A strangely vulnerable place

What does the shadow know?

I recently was pointed to an excellent blog post by someone who writes about disability. Her post No, You Are Not Adam Lanza’s Mother and Yes, Your Kid’s Privacy Matters really struck a nerve with me. She basically took to task the author of a blog post that went viral, recounting personal struggles with a challenged kid and what she felt she was forced to do. She seemed to truly believe that her kid might one day turn into a shooter like the one who massacred all those little kids and teachers in the Newtown, CT elementary school.

When I read the words of that mother who blogged about her troubled son and publicly “outed” him in ways that can — and will — follow him the rest of his life, frankly it was eerie. And like the author of No, You Are Not Adam Lanza’s Mother, it really bothered me, hearing a mother tell the world about her usually brilliant, sometimes violent son. To all appearances she was calling out for help. I got that. But I also had to wonder – what about her son? And not only now, but what about later?

Certainly, it must be horribly, terribly difficult for any parent to struggle so much with a kid like that. I feel a great deal of compassion for her. At the same time, I also cannot help but think of my own mother, who spent much of my childhood reaching out for support and help from her friends, by telling them what a difficult time she was having with me and one of my other siblings, who was also a “problem child”. I can remember quite vividly the winter vacation we took with the family next door, when I was 12 or so, and I overheard my mother complaining with great anguish about me and my anger. She could not understand why I was so bitter, so angry, so uncontrolled. I’ll never forget the tone of her voice, the disgust, the helplessness, the blame — as though my anger, regardless of the cause, was an insult to her.

I was making her look bad.

After all, my other siblings were so good — except, of course, for the other problem child who ended up addicted to heavy duty drugs, dropped out of high school in 9th grade, and was in and out of trouble with the cops for years. If only we could all be like the other three who were such good kids, such diligent students, so responsible for their age. If it weren’t for the two of us, everything would have been just right — no criticisms from grandparents, no condemning stares from strangers, no tsk-tsk-tsk from the “church family”. Just a nice all-American family growing up together in a happy little unit.

But of course, there was me… the kid who’d gotten hit in the head a bunch of times (not that anyone put two and two together and understand that was why I was so angry, so quick to act out, so impulsive, so unable to keep focused on anything for long). I was a problem. An embarrassment. A puzzle that could never be solved. I was the wedge between my family and perfection, the barrier between my mother and her happiness. My dad spent a lot of time traveling for his work, when I was a teenager, so he got out of dealing with us, most of the time. So, mom was left to deal with me and The Other One. We were her cross to bear. Especially me — at that point in time — age 12-13, when I seemed irreversibly at odds with everything in the world, including myself, and nothing could calm or soothe me except solitude and the company of my own imagination.

And I wonder about that kid who got basted in that blog post. I wonder how he must feel — how he’s going to feel. The sound of my mother’s dismissing, disparaging, judging, disgusted voice in that cabin in the woods, some 35 years ago, stays with me to this day, and it did a number on my head for years after I first overheard it. I cannot even imagine how that kid must feel, having his issues broadcast all over the world wide web, for all to see and read and think they know about.

Truly, it must suck.

What also sucks, is imagining what it means for the kid long-term. He’s been committed, and his mother has publicly said he’s a threat. What are the chances now, do you think, of him ever being admitted to a public school, or for that matter a college? What school would want him? What college — especially considering the episodes at Virginia Tech — will welcome him with open arms, with a record he’s already started at 13? It probably makes no difference if they sort out his meds. It probably makes no difference if his chemistry rights itself with his advancing years. And it certainly makes no difference, if he learns coping mechanisms and behavioral strategies that help him keep centered and grounded in the midst of any storm.

The damage is done. His face and his name are out in the open for all to see. He’s well and truly screwed.

But hey, at least his mom feels better, right?

What a strange feeling this is. I can only be thankful that my mother had no access to the blogosphere when I was a kid. If she had, she would have been all over it, broadcasting her woes and my ills to the world on every forum and blog and social media outlet she could get to. She did that sort of thing — old-school — as much as she could, with both me and my other problem sibling, with whomever she could, so long as they were willing to listen.

To this day, she hasn’t let go of the pain and humiliation and hurt which my ex-addict sibling brought to her and her otherwise perfect family. She continues to punish them with judgments and criticism and public humiliation, even decades after they had their last high. And she continues to treat me like I’m somehow deficient — to this day she still jumps a little whenever I make a sudden move, as though I’m still as unpredictable and volatile as I was when I was younger. It makes no difference that both of us kids have paid our dues and gotten our lives in order. It makes no difference that we are different. For her, we are just the same.

She remembers. She remembers what we did to her and her chance at perfection. And we will never live it down.

That recollection of what it’s like to have your mother broadcast your illness for her own sake… it’s only half the actual struggle with all this I’m having right now. The other half is with privacy, and the freedom to be anonymously imperfect in this increasingly invasive world. There’s a reason I don’t tell people who I am and where I live. There’s a reason that no one I know is aware that I keep this blog going. Because people just don’t get it. Unless you’ve been in this kind of situation, where your brain and your body and much of your life are all seemingly pitted against your will and best intentions, you cannot know how it is. But you can sure as hell judge. You can sure as hell condemn. And you can sure as hell make certain that your views are known — whether it be on Twitter, Facebook, blog comments, or some other online social medium. There’s just too much talk and not enough knowledge, too much criticism and not enough compassion.

And that is a battle I choose not to take on. Because it’s a losing one. A long and losing one, at that.

Now, being curious to see if there was any kind of response/backlash against the blogger who took issue with Pseudo-Adam Lanza’s mother, I checked back today. Sure enough, she got a ton of comments, apparently a lot of them were not that great. She followed up with a great post: Debriefing: On the Ethics and Implications of Outing a Child in the Media and she touched on many of the things I was thinking, myself. I hope you’ll read her piece – she says it all quite well.

In the end, like many people after the Sandy Hook Elementary massacre, I’m feeling quite raw and vulnerable, these days. But even moreso, as someone with a history of cognitive issues and anger issues and attentional issues that could easily be amplified and skewed by the scapegoating mob who are seeking to root out “bad influences” and “threats” from polite society. Behind every rock, there seems to lurk a demon. People are looking high and low, and you generally find what you look for. It’s truly bizarre, to feel that after so many years of working so hard to gain some semblance of normalcy, I should experience this sense of intense vulnerability — not as a victim, but as someone who might be targeted by the status quo, because of my past. Especially my childhood.

And it makes me reluctant to actually speak my mind and talk about what’s really going on “ïn here”. Someone might take it the wrong way, after all. And then what?

I know I’m indulging in some pretty far-ranging what-if’s… and yet…

Are people with mental illness going to be targeted by an uninformed and aching public? It’s quite possible.

Are people who have different cognitive capacities going to be singled out and marginalized by a world seeking desperately for ways to return to normalcy — a normalcy which never actually existed and we frankly will never “get back”? It wouldn’t surprise me if that happened.

Are people with known anger issues, who struggle with impulse control, who honestly and sincerely work towards keeping to stable ground and staying centered in the midst of chaos going to be seen as potential threats to those around them? I wouldn’t doubt it.

In the extremes, of course we have to be careful. We have to be wise and prudent and use our heads and not let the batshit crazy people loose their rage on the rest of us with tools of mass destruction. But there’s a whole lot of different kinds of crazy swirling around in many, many guises, and I for one wouldn’t care to be labelled by the maddening crowd and possibly targeted by those who “mean well” and are trying to protect their loved ones from threats they imagine are there.

Nor would I want my ills to be dragged out into the light of day without my consent or say-so, and marked as “a future Adam Lanza” — just because my mother needed to feel that she wasn’t quite so alone.

Holiday Party TBI Hell – Glad that’s over

It’s not all cheery sh*t

I just got up from my nap, a couple of hours ago. I lay down about 1:30 and woke up at 5:30 or so. Four hours… sweet. I really needed that nap. I have been feeling really off for the past several days, and going to that Christmas party for work last night was no picnic.

For the record, I friggin’ *hate* Christmas parties. Holiday parties. Whatever. They seem like an exercise in vacuousness… you stand around and interact with people you work with, just for the sake of interacting… I don’t get it. The only reason I have anything to do with the people I work with, is because I work with them. It’s structured. We all have a reason for being there. We collaborate and we coordinate and we reach goals together. But socially? I would probably have nothing to do with any of these people, and they’d probably not know what to do with me, anyway. Seriously, the only reason I have any contact with these folks — like my family — is because we are connected by something larger than ourselves.

Oh my God, parties bore the living crap out of me. Especially big ones where everyone is milling around “having a grand time”. Not only are people drinking, which slows them down and turns them into the equivalent of walking mossy stumps, but the things these stumps choose to “discuss” bores the crap out of me. There’s nothing to it. Nothing. Nada. Zilch. They just talk for the sake of talking, to get a certain reaction out of others. To be witty. To be clever and whatnot. That’s nice for bonding, in a way, but the primary bond I feel with these folks has to do with getting stuff done. It doesn’t involve socializing. Not voluntarily, anyway.

Socializing “for fun”? How tiring. Seriously.

Bah humbug. Or is it really that? When I think about it, it’s not that I lack holiday cheer — I feel quite grateful and, well, stable, this holiday season. I am on good terms with my family, I don’t dread having anything to do with them, and despite having no money for presents at Christmas, I’m going to think of something. I’ll manage.

The thing that gets me, is how hard it is for me to be in large groups of people in large spaces with unstructured interaction. The company party last night was in a very large venue with lots of visual stimuli. There was a lot to see and do, and there were hundreds and hundreds of people, most of whom I did not know — and I didn’t care to hear their conversations, if truth be told. It was loud — so many people drinking and talking… a rock band playing… the sounds of silverware on plates and glasses clinking and voices getting louder and louder as the evening progressed… I tried to block it out, but I couldn’t. It was all too much.

I got there a little late, which was fine. My spouse had to work that night, so I was flying solo. I found my team… and then found that I just couldn’t hang with them. They were in the center of the big hall, milling around with tens of other people, talking about this and that — nothing, really — and I was starting to feel sick. I hadn’t been feeling well all day, as it was, and my middle ear was totally screwed up with fluid from an upper respiratory infection that went for my ears — as it often does. Nothing like wading into a huge hall of loud people, feeling like you’re falling over, to put a damper on the evening.

So, I ditched my team and caught up with another coworker (who I consider a friend) who had come with another friend of theirs, and we ducked out to get some food and just hang out for a bit. That was okay. But again, the whole social scene… all the things to see and do and take in… for me, it was nothing short of torture. And on top of it, I was wearing a suit, so it was uncomfortable and formal, and I had to keep checking to make sure I wasn’t coming apart in places, as I sometimes do. Nothing like having things unzipped or otherwise disheveled to put a damper on the evening.

The three of us ended up going to some of the different special events that were organized for the evening, and then I caught up with my team at the end. We took a group picture together, stood around talking a bit, then we all headed home. They said they missed me at supper — they all ate together, while I was off with those other friends. I felt bad that I missed them, but at the same time, they love to mix and mingle, and I was feeling so off balance, so “off” in general, that I would have been no fun at all, most likely.

Had I mentioned that I hate big, loud parties?

Anyway, I got home much later than I wanted to, and I went straight to bed. I got maybe 7-1/2 hours of sleep, and when I woke up, I felt like crap. I took care of my errands and did the things I needed to do. Then I lay down for my nap, and 4 hours later, things were looking up. I’ve been drinking a special ginger-honey tea I discovered, so I’m feeling a lot better, but I’m feeling pretty down on myself for not being better able to handle it all, last night. I was actually looking forward to the evening, but when I got there, I realized it was probably a big mistake for me to go, in the first place. I could have begged off, saying I was sick, which was true. But I really wanted to go.

Oh well, at least I went. That’s something. I managed to navigate the evening without awful incident, despite feeling so dizzy and lightheaded and off. I didn’t melt down, in the aftermath. And I didn’t do anything stupid like overstay my welcome and/or say or do anything really dense and regrettable, as I have in other social situations. I kept pretty cool, all things considered, and even though it was awkward and painful for me, and I just didn’t feel right at all, I got a lot of free food out of it, and I managed to complete the evening “successfully” — as in, no fights, no humiliation, no things said and done that can’t be taken back. So, that’s something.

Plus, I got my “inoculation” against later holiday party impulses — next time somebody wants me to come out and party, I’ll be better able to remember why that might not be such a great idea to spend an evening like that. Next time, if my spouse can come, I may go — because they are much more social than I am, and they help to keep me oriented. Then again, I may not. Because both of us actually friggin’ hate company parties, even if they do a much better job of interacting than I do.

I’ve never been a big fan of large groups of people. I’ve always been that way. But throw in the sensory issues that have really exacerbated since my TBI in 2004 — loud noises and bright lights bother me to no end when I am tired, and last night I was tired — along with being even more easily fatigued by all the stimuli and interaction… along with vestibular trouble… and it makes for a really tough time.

I just have to remember that, the next time someone invites me to a big party and I hear myself saying, “Why yes, I’d love to!”

The best part of the party last night, was driving home. Even if I was practically falling over in my seat and I felt like crap and I was afraid I’d fall asleep at the wheel, it was still such a relief to be getting OUT of there. That got me home. And it felt great to be alone in the car as I drove.

That’s something.

New week just around the corner. We’ll see what happens.

Overcoming overstimulation

Lots going on...

I’ve got a big trip coming up next weekend — I’m taking nearly a week to go see family in several states… kind of a follow-up trip to make up for not having been there for the holidays (I was sick and couldn’t travel). There will be lots of driving, lots of activity, lots of interacting with relatives I haven’t seen in many years. There will be a family reunion with relatives, some of whom care about me, others of whom couldn’t care less about me. There will be time with siblings as well as aunts and uncles and cousins. All together in one big melting pot for the weekend.

This is coming on top of some very busy times at work. I’m a bit apprehensive, because I’ve been tired and I’ve had trouble sleeping, and I am concerned that it might affect my ability to deal with my family. I also worry that it will affect my ability to deal with my spouse, who is not a big fan of most of my family. We come from very different backgrounds, and my spouse is not always the most open-minded individual when it comes to differences.

I know I shouldn’t stress over this, but I am a little bit. I have to get a bunch of things done for work before I go — it’s really BAD timing, but there it is. My workload is just crazy, these days, and it will be until mid-September. Then it will probably pick up again through the end of the year. It’s hard to believe July is almost over. August is so packed, it might as well not even exist. Just busy, busy, busy all around.

But it’s a good thing. It beats the alternative. I’ve become a key contributor on some important initiatives, so that keeps me going and it gives me a sense of belonging to something bigger than myself. And I have to keep that in mind. It’s another way of looking at it — it’s a good thing, that going away for a few days is a problem. Because if it weren’t I’d be in trouble.

Likewise, if I think about the upcoming trip with my relatives, one of the reasons it promises to be so full, is that so many people want to see me. They want to talk to me, to find out how I’m doing, to tell me about their lives. They want to share a lot with me, and they don’t realize how overwhelming it can be for me. Over-stimulation has resulted in me going temporarily deaf and blind — I was with extended family members who were very high-strung, and there was so much going on, my system just shut down, and for a short time (maybe 10-15 seconds), I couldn’t see or hear anything. Everything just went silent and black. I came back (of course) and felt dazed and confused. I suspected it might have been some sort of seizure, but then I got checked out, and everything seemed to be fine, actually. So, it was probably just the overwhelm.

Thinking back on that day, which was about six months before I figured out the TBI connections to the difficulties I’ve had in my life, I can think of a number of things that made it more difficult, overstimulating and overwhelming:

  1. I was extremely anxious about a lot of things — if I was wearing the right sorts of clothing (people around me were much better dressed than I, and I felt self-conscious in my jeans and t-shirt).
  2. I was pretty brittle and inflexible in my expectations for the day — I wasn’t going with the flow, and when the group kept changing plans, I got increasingly uptight.
  3. I wasn’t eating properly — I wasn’t eating the same sorts of foods I normally did.
  4. I wasn’t resting enough — I had been pushing myself to go-go-go, the whole time, and I was very fatigued.
  5. I wasn’t exercising enough — I wasn’t exercising at all, actually. I hadn’t been taking the walks I needed, and I hadn’t been working out regularly the way I have been over the past couple of years.
  6. I wasn’t wearing my sunglasses — Big problem on that very sunny day. The brightness only exacerbated everything else, adding to my anxiety and stress.
  7. I wasn’t in command of my thoughts and my reactions — I was being pushed and pulled in a million different directions, and I wasn’t driving the car of my own mind. I was letting everyone else decide for me how to think, how to talk, how to behave. I was trying to fit in and do the right thing so I wouldn’t be as conspicuous (and embarrassing) to my extended family/in-laws. The result was that I stood out even more, I was less able to participate, and I lost it (literally) for a short while that day.

Looking back, I can see how I’ve really come a long way in the past 4 years. I’m nowhere near where I used to be, and I have to remember this as I prepare for this next trip. My anxiety levels have decreased dramatically since I started exercising on a daily basis. And my whole world view has changed as a result. My neuropsych has been a huge help, keeping me honest and realistic — in a good way. They don’t let me get away with the old “stories” about how debilitated I am by my TBIs. They don’t let me easily jump to conclusions about being incapable and incompetent, just because I happen to be human. And they don’t let me make excuses about poor choices I’ve made and things I’ve done. They don’t beat me up over it, but they also don’t let me write myself off with some easy excuse about being impaired.

And that’s quite a feat to accomplish. Because I have a lifetime of experience of reaching the “logical” conclusion that there is something wrong with me, and I am less capable than I actually am. I’ve had plenty of people telling me there was something wrong with me. I’ve had plenty of people “protecting” me from myself. I’ve had plenty of people ditching me or taking me off tasks when I didn’t perform as expected.

It was all a crock, but when you hear it often enough and everyone seems to agree, it starts to sound like the truth.

But it’s not. It’s the farthest thing from the truth.

The real truth is that I have the tools and the experience and the proper mindset to approach this coming weekend in a stable, productive frame of mind. I’ve managed equally — if not more — challenging situations quite well, and I’ve come away a better person as a result.

I know from experience that I don’t have to bury myself in work in advance, trying to keep my mind off things. I don’t have to run away from it, drive myself with all sorts of stress that takes my attention off my anxiety. I can rest and relax and also get good exercise in advance. Eat well and take care of myself, and remember that I’m going to meet and greet people who actually love and care for me, even if they don’t always agree with how I live my life and vote.

That might actually be the hardest thing to handle — that anyone could actually love and care for me. That all my injuries and my issues and my supposed shortcomings might not matter nearly as much as I think they do. It could just be that I have a great time when I go on this trip. It could just be that the only over-stimulation is actually in my mind. And that if I can tame that, all the rest will come naturally to me.

It could be…

I finished reading a book

Here’s a blast from the past. About a year ago, I wrote this post (but forgot to publish it), absolutely giddy about having finished reading a book. Looking at where I’m at now, it’s pretty amazing the changes I’ve been through. After not having been able to get through an entire book in years (although one of my favorite pastimes was always reading), last November, I actually finished reading a book.

Here’s the post:

November, 2009

Yesterday afternoon at about 3:30 p.m., I finished reading Aging with Grace, the book about the Nun Study of those long-lived School Sisters of Notre Dame, which explores how and why some people live long and never succumb to Alzheimer’s or dementia, and why others may be more vulnerable. This book has a lot of meaning to me, because as a multiple TBI survivor, I’m statistically more vulnerable to dementia, and about the last thing I want, is to be incapacitated and demented later in life. No thanks…

I found a number of tips and clues about what you can do to avoid dementia — even if you do have some brain degeneration — and I read reports of nuns who had all the signs of advanced Alzheimer’s, but no symptoms whatsoever before they died. Sounds good to me.

I’m invigorated by this new information. I highly recommend it to anyone. And I’m even more invigorated by the fact that I actually finished the book! It took me a month to read all 219 pages, but I did it!!!

This would not be big news for most people I know. Most people I know read books as a matter of course, and when they start a book, they generally finish it (unless it’s truly awful and/or they run out of time). I, on the other hand, have not finished reading a book I started in a number of years. It’s hard for me to remember the last time I actually reached the last page of a book I started.

Let me walk around my study, looking for a book I know I’ve read cover to cover… Let’s see… I am reasonably certain I’ve read about 56 of the books in my study, which constitute maybe 10% of the total on my bookshelves. And the  most recent one I finished prior to Aging with Grace was consumed in a hurry back in 2006. I may have read something from cover to cover in 2007, but I cannot recall.

Now, mind you, I have tons of books, but most of them I’ve only read the first couple of chapters, if that. It’s a lifelong habit that goes way back to when I was a kid, and I never even really realized it was a problem, until this past year or so, when I started to take a long, hard look at my reading habits — or lack thereof — in the context of my TBIs.

It’s a complicated issue — part difficulty with the material, part difficulty with keeping focused on the material. I can be really distractable, so I often end up wandering off on cognitive tangents, when I’m reading. But part of what feeds my distractability, I think, is the fatigue that sets in after I’ve been reading for a while, as well as the discouragement I feel when I realize my eyes have been skimming pages for the last half hour, and I cannot remember what I just read. It’s complicated. And it sucks. And it never occurred to me before that I might have difficulty reading. I’m such an avid infovore — I’m usually reading something. Who would guess that reading is such a challenge for me?

It’s taken some adjusting to get used to this fact. And the adjustment has been as much of a hit to my self-image as anything else. I was always known as a bookworm. Much of my knowledge comes from books. If I’ve been reading at substandard level all these years without knowing it… and also not grasping a lot of what I was reading… what does that say about me, as a person? Does it completely invalidate many of the beliefs and assertions I’ve had about myself, for over 4 decades? It’s troubling to think so.

But now that I know reading is a problem for me, I can take steps to do something about it.  And that’s good. I literally cannot live this way, not being able to read a book from cover to cover. I am NOT going to continue in life this way. Something must be done. I need a plan. Here’s my plan — which so far has worked well, the first time through.

I need to acclimate myself to reading for longer periods of time, by reading for fun and pleasure, getting up to speed with that, and then starting to read for learning and understanding. I need to practice regularly and build up my stamina, and also develop different strategies for how to handle the material I absorb.

First, for the fun reading, I need to identify a topic that interests me which will stimulate me. I need to have some investment in the material, some payoff, some reward that comes with it. Preferably, I need to find something to read that also has “companion” material, like a movie that was made of it. I need to have the information presented in different formats, that different parts of my brain can “hook into”.

I chose The Bourne Identity, because it’s an action adventure novel that’s broken into relatively short chapters. It’s also got a movie made of it that is one of my favorites, and I have visuals of the action to prompt me as I read along

Second, I need to set aside time to read. I have to have time to do it, when I have time to rest either before or afterwards, or both.

I do this on the weekends. I take naps on the weekends to catch up with my rest. And I read during the afternoons.

Third, I need to gradually increase the amount of time I spend reading. I pay attention to how much time I’m spending, how I’m feeling, how my pace is. And I really congratulate myself, when I’ve read more than 10 pages at a sitting and understood what was being said the whole way through.

I can do this, but I also need to make sure I’m not tiring myself out. I need to make special efforts to reward and praise myself for having read as long as I have. I tend to get down on myself and think I’m stupid, when I’m not reading well, and I assume that it should be easy for me. But my reading has never been as strong as I always thought, and since my fall in 2004, it’s got even worse.

Fourth, I will then transfer my stamina and interest and good experiences with action/adventure fiction to my other non-fiction reading. And I must pace myself, gradually working my way up, again, and re-reading the things that I didn’t get the first time around. I need to keep an action/adventure book on hand, to keep my interest bolstered. I don’t worry so much about finishing the fiction in a timely manner. It’s more for the sake of keeping my spirits up and having a good experience while reading, so I can focus my more intent energies on the non-fiction/professional reading.

This is what I’ve been doing, on and off, with Aging With Grace over the past month. And now that I’ve done it and see that it works(!) I am ready to move on to my professional reading.

This is such important work. My survival and success depends on it. I’ve got a bunch of books I bought in the past that I need to read for work, but I haven’t been able to crack them. Now, I’ve got to do it.  Now I have a strategy and a plan, and I’ve proved (at least once) that it works. Reading really is fundamental. And the fact that I have done it with Aging With Grace has really lit a fire under me.

But before I go any further, it’s time for my Sunday afternoon nap.

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.


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.


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?


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.

Achieving more by doing less

I am really resisting writing this post, but I have to put it out there for the sake of honesty — and also to get it into my head that this is the way things are now.

It’s not that what I’m thinking about is a bad thing, or even an unpleasant thing. It’s a new thing — a true thing — that I’ve been resisting for as long as I can remember, much to the dismay of my family, my coworkers, and my neuropsych.

I hate having to admit that I have been wrong, and they have been right… but in this case at least, I have to admit it:

I get more accomplished, when I do less.

Now, it might not seem like that big of a deal, to admit it. What’s the big deal?

Well, people have been “on” me for years, that I do too much. I take on too much. I have too much on my plate. I’m spread too thin. My spouse has been lecturing me for years, that I don’t relax enough and I have too many projects going on. We’ve actually had some pretty bad fights about it. I defended my hyper-busy-ness with every fiber of my being, till the bitter end, and it’s not helped our marriage at all. But I was convinced that I was right, in having twelve balls in the air. I felt so energized. Like I could do anything. And it never seemed like there was a problem. If I didn’t finish things, so what? They were boring, I told myself. And I needed a fresh start.

Well, that outlook has modified somewhat over the past couple of years that I’ve been working with my neuropsych.  Taking a long, hard look at my patterns on a regular basis, I’ve realized that being super-busy is often a direct result of anxiety. It’s not about positive exuberance. It’s not about having a vision of a future I can eagerly step into fully and with all confidence. It’s about existential angst that is welling up and driving me ahead of it, like a wild stagecoach driver whipping the team of horses into a mad gallop… in the meantime not holding the reins or guiding them in any particular direction.

This mad gallop is plain to everyone else’s discernment. It’s obviously a ploy on my part to avoid life, rather than engage with it. But it is disguised from my view by something in my perception that interprets a mad dash towards whatever comes to mind as a positive and life-affirming thing ;}

Over the years, countless people have tried to get me to stop and look at what I was doing, but I resisted — and resented — their “interference” with my grand plans. I wasn’t planning, of course. I was just flying willy-nilly in every and all directions, for the sake of flying willy-nilly. Nothing more. And when I got to a point where I couldn’t continue with what I was doing, I’d drop it… and then wonder, sometimes years later, why I ever quit what I was doing, if I was so devoted to it.


Well, as I mentioned, that’s been changing over the past year or so. Once I started logging all my activities and tracking them — for real, not in some quasi-reflective journal entry that rambled on about this and that for pages on end — I started seeing what was really going on in my life, and I wasn’t pleased. I looked back on all the projects I’d started — each one seeming like the thing that was going to catapult me to greatness and/or solve all my personal problems through professional success. What I saw was not greatness, but whatever-ness. Oh, man… what a wakeup call.

And I started to admit that maybe I was spending an awful lot of time on things for the wrong reasons. Maybe I was spreading myself too thin. No… obviously I was spreading myself  too thin. Judging by what little I was getting done versus what lots I was putting into my efforts, my approach was not effective. It was downright disastrous.

So, I decided to change things up. I swept a whole bunch of projects off my plate. I trimmed the fat off my docket considerably, tabling projects I thought would be cool, but obviously demanded a lot more time and energy and manpower than I could muster. I decided to do without a lot of the lists I made for myself. I also quit imagining I was going to have these multiple career paths, and be able to pick and choose between the cream of the crop, on down the line, whenever I chose to switch my path.

And it was working out pretty well. Suddenly, I had a lot more time to devote to my pet projects — the really pet ones, that is. I could focus more on the details that had slipped by me before. And I had a lot more bandwidth to do the things I enjoyed during my free time. Sleep hasn’t appealed to me much over the past months, because I was still totally into the idea that I could continue to keep up a blistering pace on a select few things — for the fun of it. Literally. I felt really “on” at work — I felt like I was really making headway and was taking the tiger by the tail.  Woo hoo – right?

Um… not so much. Now, months on down the line, I find myself worn out, all turned around by myriad details that once seemed so clear to me, and not delivering at the rate my boss wants me to. My thinking is not clear, my relationships at work are suffering, I feel like I’m slipping into a hole of my own digging, and I’m battling to get myself out. I find myself taxed and tapped, angry and raging and resentful and antagonistic and defensive and increasingly volatile… saying things I wish I hadn’t… and my marriage and work situation are both suffering as a result.

Here, I’d thought I was supporting my family and my coworkers better by driving myself like a crazyperson, taking on all sorts of tasks, when all I was doing was driving myself — and my spouse and my coworkers — crazy.

Which brings me to what I’ve been learning — the hard way — over the past couple of weeks.

I actually perform better, and I accomplish more, when I do less.

… As in, when I work in intervals — planning and thinking things through ahead of time, then mustering my energy and tackling tasks with full attention and focus.

… As in, when I spend less time on busy-work, and I devote the bulk of my attention to strategic and tactical planning and implementation, saving my logistical energy for select tasks — no more than two or three a day.

Indeed, I do better, when I tackle less of the little niggling details work that’s just filler for my time and is more about my brain thinking such-and-such is important, when it’s not really.

And I accomplish more when I don’t insist on taking on this mountain of everything by myself, as I’ve always been prone to do.

Truly, the practice of only doing 2-3 significant things a day, when I used to tackle at least five-to-ten times that amount, is a huge change for me. It’s a difficult change… An unsettling turn of events. It makes me nervous — incredibly anxious. I feel like I should be doing something. But during those stretches when I’m “doing something” to the tune of 20 deliverables a day, and I look back on my notes about what I actually accomplished, well, the results are a lot less impressive, than my fantastical plans.

But if I break it all down and pick and choose from the things I need to get done and don’t worry about the other things, till I get the most immediate couple of things done, it’s friggin’ magic, man.  I get waaaaaay more accomplished if I take things 2 and 3 tasks at a time and do them in an extremely focused and intense fashion, than if I “pace myself” and take on 20-3o items (no joke) at a “reasonable pace”.

They say timing is everything. It’s true. It’s even more true that the right timing in the right way for the person in question is more-than-everything. Some people can go slow and steady through a mountain of small details. I, on the other hand, drown in those details. Just like there are slow-twitch muscles that long-distance runners use, and fast-twitch muscles that sprinters use, I’m more of a fast-twitch kind of person. And if I slow down to go at a “reasonable” pace, I’m toast.

So, there we have it. I’ve had my helping of crow for the day. I have to admit, it feels good to say/write it out loud, but it’s been a long time coming. And I have a lot of work to do, to reverse the damage that’s come from ignoring and denying the truth about how I work best — and worst. But reverse this, I will. I’m the comeback kid. I’m not going to quit till I get where I need to be.

Even though I know it’s good for me and it’s the only way I can really work effectively, the idea of only doing a few things  a day still makes me intensely anxious. I don’t expect to get used to it overnight.

But you know what? Doing a little bit at a time in a very focused, intentional way gets me there. And since actually getting there is what matters to me (and my spouse and my coworkers and my boss) — even more than the “journey” on the way — that’s what I’ve got to focus on. Results. For real. Not plans and methodologies. Results. What works. What works for me.


March is Brain Injury Awareness Month

And this month, the Brain Injury Association of America is putting a special emphasis on concussion with their campaign “A concussion is a brain injury. Get the facts.”

I’m really happy they’re doing this. As someone who has sustained a number of concussions in the course of my life — several of them during sports events — this topic is near and dear to my heart.

The more we know about it, and the better trained coaches are to recognize and respond to these events, the better off we will all be.

Because concussion doesn’t just affect the individual who’s been injured. It affects all the people they interact with, their families, their teachers, their peers. And in the long run, it can affect society on a very large scale. Violent crime and repeat offenses have been connected with TBI,

About eight years ago, a study was conducted which tested the hypothesis that TBI is related to violent crime. What they found was that more than half of the participants in the study (half of whom had been convicted of domestic violence, half of whom had no convictions) had sustained a TBI — the violent offenders had had more severe injuries.

Knowing about TBI and responding appropriately to it is important not only for the criminal system, but for all of us in everyday society. Whether it’s dealing with anger management issues, attention issues, poor performance which cannot be explained any logical way, or a host of other issues that come up after TBI (sleep issues being a big one for me as well as many others), the after-effects of TBI (even “mild” TBI) can have dramatic and long-range impact on many, many aspects of our lives.

And since we know, deep down inside, that none of us is really an island, we can safely way that individual problems can and do become collective issues.

So the more we know about TBI as a whole society, indeed, a whole world, the better equipped we can become to respond appropriately to it.

I hadn’t actually intended to write about this today, but m reminded me that it’s Brain Injury Awareness Month, so I’ve got to make mention of it.

I guess maybe I’m supposed to give more thought to the other things I was going to write, before I write them.

All good🙂

Thanks, but I think I’ll pass on the knitting

This is a sort of follow-on to my last post about extreme sports, extreme living, extreme dying.  Apparently, the extreme sports athlete in me is feeling antsy. Maybe it’s the melting snow — where did it all come from, anyway? But I’m getting distracted (again😉 )….

Recently, a reader whose opinion I really value offered me the following advice:

… take a deep breath. Go for a walk and pet every dog you meet. Plant flowers. Sew. Get clay and make things. Knit. Bike ride. Join a running club. Volunteer at a homeless shelter. Listen to the video of the vets with TBI’s. Get angry and then forgive yourself.

I did part of what they suggested — I checked out the video of the vets with TBI’s, and I got angry. I also forgave myself — just because. I’m not sure what for, but I forgave myself.

Still, I have to say, I won’t be petting every dog I meet along my walk. I’ll likely be walking in the woods, crossing terrain I usually can’t cover in the summertime. Planting flowers, sewing, making things out of clay… knitting… riding bikes… volunteering… While those are things that may appeal to some, for me, they just don’t do it.

I’m built differently than that, and I need more excitement than that for my life experience. I’m much more of an out-there kind of person. Am I an extreme experience junkie? Perhaps. I prefer taking myself past where I’m comfortable, and seeing what all the world has to offer.

I just cannot seem to bring myself to just settle down and do quiet things that feed my spirit on a very simple manner (“simple” in a good way, not like “stupid” or “simple-minded”).

It just isn’t who I am.

And I have to go with who I am. I understand what folks are saying about needing to accept myself and my limitations, but again — I’m back to the idea that we needn’t just abandon the core, vital parts of ourselves because our brains have been injured.

Part of what’s piquing me about this, is the photo presentation I watched the other day on that was done by a brain injury support group in Massachusetts. Part of the presentation was about acceptance. Another part was about chaos. And you know what? Although I could hear what they were saying, I also had this overwhelming sense that the things they were accepting and acclimating themselves to were totally avoidable and fixable.

As in, if your apartment is a wreck, and it gets to be a wreck on a regular basis, do something about it. Make notes about where to put things — use labels, like that one person does. Make a commitment to clean up after yourself on a regular basis. And if you can’t do something about it yourself, get help. Don’t just sit there in your own chaos. Get up and do something about it. Clearly, if you can tell that your place is a mess, you can tell that something needs to be done about it. So, do something about it! Don’t just sit there in your mess! My God, man/woman — have some self-respect!

I’m not saying this to be harsh. I’m saying it because it needs to be said. TBI survivors need to be encouraged to be fully human, wherever and whenever possible. Sure, things may change, but how is sitting in your own chaos truly a reflection of who you are and what you deserve from life? We ALL deserve more. Encouraging people to put up with things that are either avoidable or fixable is akin to killing a part of them. And we need to not do this. The truth sometimes hurts — but it can be a good hurt, especially when it lifts us out of our self-pity and self-sabotage, and ennobles us as full human beings.

Okay, I hear you saying I’m being too hard on people, and I need to have more compassion. Well, that’s what I’m doing — having compassion. As in, not giving up on someone because they have a head injury. Trust me, I sat in front of my computer for hours each day, for weeks and months on end, after my latest TBI… doing nothing… staring straight ahead, not remembering people who came into my cubicle (who clearly knew me), attacking everyone who came within earshot, crying for hours at a time, spending all my money, taking no time to advance my skills and keep myself sharp. It took months and years of tough determination and very hard lessons, to get past it. But you know what? I did. And while things aren’t perfect, and I have a long way to go, I’m a far sight better off as I am now, than if I’d just accepted my memory issues and my disorganization as “how it was”. I often wonder what might have happened, if I’d actually had someone around me who could offer me help.

It’s quite exasperating for me, to watch and hear how some folks just give in. Especially when they’re a far sight less impaired than the veterans who are struggling and fighting each and every day to get the use of their limbs back. In some ways, I suppose it’s almost harder to handle the little glitches that come with mTBI — they’re less obvious, and you tend to not get the help you need. But if you can discern your problems, and you can tell it’s a problem, it seems to me you are in a position to ask for help in fixing them.

A lot of it comes down to philosophy, I think. That, and what you think the purpose of human life is, on a very fundamental, soul level. Why are we here?

Why bother having these experiences, if we’re just going to retire to the background? Why give in?


Me… I choose something different. Today, on the holiday, I choose to put some hours in at work, so I’m more caught up for the rest of the week. Sure, I have to work harder and longer, but it sure beats being constantly taken by surprise😉