I’ve been feeling a bit down, lately. Dragging. Drab. In pain. I’ve been having some tightness around my ribcage that really hurts when I laugh. I can’t remember doing anything to myself – – no recent injury. Just maybe sleeping on it wrong.
I’ve been feeling down, too. Just a low-level depression. The Catch-22 situation with my neuropsych — if I really go into great detail about how much help I need, then I get bumped down in the proverbial pecking order and end up stigmatized (and potentially looking at higher insurance rates, on down the line, if the current health coverage changes go through). But if I don’t enumerate all the different ways I need support, I can’t ask for it. Literally, it’s Catch-22.
I think I’ll read that book again. I think I read it years ago, and I need to read it again.
I really have to take matters into my own hand, in this regard. I’m not disabled enough to require outside help to function at a basic level. That can be arranged. I have the means to do that, and I have books and information at my disposal to expand my understanding about what’s going on. I need to just do that. Take matters into my own hands, and reach out to others for help with clarification.
I’ve signed up for some free online courses about the brain. I need to stagger then, so I’m only taking one at a time. I think I’m going to use those online courses — and access to the instructors — as a professional reference point. I’m not actually getting the kind of assistance I want from the NP I’m working with now, so I’ll branch out and cover myself in other ways.
As for my day-to-day, I need to get myself back on track. I haven’t been exercising as much as I should. I’ve been locked on target with some projects I’m working on — as frustrating as it is, my work situation is keeping me busy — and I’ve been sitting too much, moving too little. I have all-day workshops today and tomorrow, which I can easily do, just sitting down all day.
That’s no good. I need to get up and move on a regular basis. I have a lot of energy, and if I don’t move, that energy tends to “back up” like a lot of traffic trying to cram its way through a narrow space.
That can be fixed, though. I exercised more today than I have been, lately, and now I actually feel better. It’s amazing, how much a bit of movement will do — especially lifting weights. Even if they’re not very heavy, still, the motion and the resistance is good for me.
I’m also working from home today, so I can walk around the house while I’m on the phone. That’s the magic of a mobile phone — it’s mobile. Tomorrow, I can walk around, too. I just need to listen in, so I can walk around the building while I’m listening. It’s not hard. I just need to do it.
And so I will.
I’m feeling better better today about my future prospects than I have been, lately. I got plenty of sleep, last night (almost 9 hours), I did a full set of exercises, I had a good breakfast, and I’ve got a path forward charted for moving forward.
I believe I can trust myself, and that I have the ability to see where I’m falling short. I trust that I can research and reach out for ideas to address issues that arise. The main thing is really to keep on top of things. Take responsibility for myself. Do what I know I need to do. And just keep moving on.
The world’s a big place with a lot of different options. I just need to make the most of the opportunities I have, keep focused on my end goals, look for opportunities, and keep moving forward.
Will the world step up and help me with my problems? Not if I don’t ask.
Do I need other people to help me at every turn? Sometimes yes. Sometimes no. The main thing is that I help myself, using what assistance I’ve gotten from others and the resources I have on hand.
I’m in a very fortunate situation, where I have the ability and the available resources (time, energy, attention, interest — even if money’s missing) to take care of myself. So, I’ll do that.
A new chapter is on the way, and I’m actually looking forward to what’s to come.
I can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.
A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.
Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.
And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.
Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.
When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.
Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.
We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.
My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.
When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.
So much for vacation.
There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.
We got home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.
Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.
So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.
The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.
But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.
And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.
But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.
And take care of myself in the process. Because I still have a lotof life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.
I actually get a few days off work, starting today. Well, starting at 11:00 today — I have a meeting at 10:30 that I have to lead. But then, I’m done.
It’s been a really challenging time, lately. Morale is terrible at work, and it’s like wading through thick, sticky mud, trying to get anything done. My own morale is not great, I have to say, but I keep on with my work, regardless. For me, the real pleasure comes from actually being able to DO the work. 10 years ago, that wasn’t the case. I was pretty much of a series of accidents waiting to happen.
My short-term working memory was shot.
I couldn’t understand what people were saying to me.
My ability to plan and follow through was negligible.
My temper was short, and the recovery time was long.
My spouse was afraid of me.
I couldn’t seem to keep a job for more than 9 months at a time – and that was pushing it, for me.
It’s all very different now, thank heavens. I’ve worked at it. I’ve rehabbed myself. I’ve pulled out all the stops to figure out how to restore myself to my former abilities — and the very positive thing is, I’ve actually exceeded my former abilities. I now have much better skills than I had before my mTBI-inducing accident in 2004. Because I could finally see what was going wrong with me, I got help from someone who could assist me, and I worked at it.
Every single day.
It was my other full-time job.
I have to constantly keep this in mind, because it’s so easy to forget. I get caught up in my daily life, I get wrapped up in my everyday experiences, and I lose sight of the fact of how far I’ve come. I get tired. Every day, I’m wiped out at the end of it all, which makes it difficult to be thankful for anything. It makes it difficult to even think or keep my temper cool. Lately, I’ve been snapping a little more in the evening than I’d like, and that’s got to stop.
I’m hoping a good vacation will help with that. Even if it’s just for a long weekend at a waterfront down three hours away. It’s something. It’s a break from the regular grind. And it’s a much-needed “reset” for both myself and my spouse.
So, as I go through my daily life, these days, surrounded by people who are none too happy to be at work and who are deeply fearful about their future, I think about how much I have to be grateful for. I think about how much better I’m doing that I was in 2007. And I think about how much farther I have to go.
Once upon a time, all my dreams had evaporated. Once upon a time, I could see no clear path forward. Once upon a time, my life was collapsing around me, and I didn’t know why.
Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.
BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.
Not everybody will experience these problems and their severity will also vary.
BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.
And I sometimes never get a second chance, because they've made up their minds about me in a negative way.
This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.
BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.
In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.
So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.
Explosive anger and irritability
If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.
BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out.
Lack of awareness and insight
The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.
BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).
It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good.
I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.
I’ll continue this post in Part 2. Watch this space for notifications.
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, reallyeasy 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.
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.
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.
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.
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.
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 nothingto 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.
New week just around the corner. We’ll see what happens.
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:
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).
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.
I wasn’t eating properly — I wasn’t eating the same sorts of foods I normally did.
I wasn’t resting enough — I had been pushing myself to go-go-go, the whole time, and I was very fatigued.
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.
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.
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.
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:
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.