I’m having a strange morning. I got up a little later than usual, and I worked out — got in my five mile bike ride and did some stretching. My spouse woke up nervous and started to pull on my attention, which got me a little pissed off. I needed to concentrate, I hadn’t had my coffee yet, and they kept talking to me and asking me questions and haggling with me over various things, like what to eat for supper, what we’re going to do later for shopping, and how we’re going to manage our day. They’ve got a business thing they’re doing tomorrow afternoon, and I’m helping them with it. That will get me out of the house and give me some time to go do other things while they’re having their meeting. So, we have a fully weekend ahead of us, and they’re anxious. So am I. I hate to admit it, but I’m quite anxious about the prospect of spending a lot of time with them over the next two days. I really don’t want to do all of it. I want to just move at my own pace and not be pressured. I don’t want to deal with crowds and stores and all of that. It’s overwhelming, and it gets to be too much for me during Christmas shopping season. But it’s all got to get done. So, I’ll do it. I’ll do it, and be done with it. And try to have a good time, in the meantime. Keep my sense of humor. Not take things to heart. Keep it light. And watch my sh*t. I noticed that I was getting really bent out of shape with my spouse — I was getting very tense and irritable and starting to do little things to provoke them. Not good. It was not helping. So, I backed it off and changed the subject. I told a joke. I quit doing those little things that I know bother them. I got a grip and extracted myself from the conversation before it escalated — as it so often does — into a full-blown argument that throws us both off for the rest of the day… sometimes longer. Backing off works. So does taking a close look at how things are happening with me… to make sure I don’t fly off the deep end and dig us deeper into a hole of antagonism and anger. The good news is, it worked. Backing off and changing the subject and making a joke, all really helped to diffuse the tension. And we are back on track to having a nice day together, without all the drama and agitation. If I can pay attention to what’s happening with me and modulate my behavior and responses, so much the better. I’ve been doing better about that, lately. Part of the impetus is that I’ve been mentioning my behavior issues to my healthcare providers, and they are all looking at me with that “meds” look in their eye. I don’t want to go on meds. I have nothing against other people using them. But I don’t want to have to take pills to keep myself on track. Sometimes they are medically necessary. I don’t believe they are for me. Or maybe they are, and I’m just digging in my heels and resisting the inevitable. I’ve never been comfortable with drugs — even when I was drinking heavily and smoking a pack of cigarettes a day, I wasn’t into drugs. They make me feel weird and off, and they mess up my head. So, no thanks. But if I become a danger to myself and others because of my volatility and aggression, then someone may put me on something. And I don’t want that. Because taking a pill for something makes it possible for me to live my life without developing the skills I need, in and of myself. If I have attentional problems, I want to solve them by developing my innate ability to attend to things. If I have cognitive issues, I want to develop my brain and my thinking techniques to improve. I believe that a whole lot can be achieved by developing the human system — the one we already have — and drugs distance us from that possibility. They relieve us of the duty to do so, as well as the impetus to change. We can take a pill and be done with it. No more work needed, other than remembering to take your meds. I’m oversimplifying, I know. There are many, many people who cannot help themselves or who just need meds to keep things sorted. And I’m really glad they have that option. For me, I’m just more comfortable working on things myself. That way, I won’t be dependent on insurance to get me my medications. And I have more freedom of choice about what I do for work and what benefits I need. I am fiercely independent, and it makes me really nervous to depend on anyone for anything. Self-sufficiency is the way for me. Like I said, everyone has their own way of doing things, and I have no problem with people doing things differently. Whatever works for you… I’ve got no argument against it. And I reserve the right to keep my independence and improve where I can, as best I can. I watch. I learn. I adjust and fix what appears to be “wrong”. And I move on. Life goes on. Yes, it certainly does. Onward.
Well, my spouse has done it again. We were supposed to leave for our vacation today around noon, and now they tell me that they’re not going to ready in time. They may — may — get up by 11:00.
That’s pretty disappointing. But then again, we are taking two cars, so I’m not going to be dragged down by their sluggishness. I have to come back home on Sunday night in order to be at the office from Monday through Wednesday. Wednesday night, I’ll head back out to the condo we’re renting, a few hours from home, and I’ll work remotely in the morning on Thursday and Friday, then take afternoons off.
I’m not sure why this “change in plans” surprises me so much. Maybe because my spouse is picking up another friend to join us for a few days, and that friend’s family is going out of their way to drop them off half-way. It seems incredibly unfair to everyone (except my spouse), that everyone’s schedules need to be re-jiggered to accommodate them. People have better things to do, than wait around to find out when they should leave the house.
If anything, it seems a bit sociopathic on my spouse’s part – like nothing matters except them and their own wishes and needs. Then again, they do have neurological issues, as well as some cognitive impairment and possible dementia, so they may not even realize that they’re being selfish. The whole neurological decline thing is a real drain, and if you forget what’s going on with them, it can be maddening. When they’re challenged, they get really angry right off the bat, possibly because they get scared at being caught unawares and not being able to think right away. They lash out and yell and threaten and cry and so forth. On the one hand, some people think they’re being manipulative, but I think it’s also a sign of cognitive decline. They really do get scared — and then they use their anger and blustering to stop me from saying or doing anything else… and that way they buy some time to catch up.
The thing is, once they get past their hemming and hawing and blow-harding, they re-orient themself to what’s happening, and then they calm down and can carry on a usual conversation.
The main thing for me is to not take things personally and get really upset when they start acting out. That happens all too often, and I forget that they’ve got cognitive issues. I take it personally and get so upset and bent out of shape — everything balloons in my mind, till the argument is not about what’s happening right in front of me, it’s about everything and anything that’s possibly related to my frustration at that point in time. My own brain goes haywire, too, so we feed off each other — and not in a good way.
Fortunately, I am getting better about checking in with myself and telling if I’m starting to get too wound up. Then I can back off — just walk away and cool off, and give us both a chance to simmer down. It’s just both our brains going haywire, and we both get scared. And we lash out. It gets to be a little much, to tell the truth, and some days I just despair about that downward cycle. But if I can step away and have some time to myself and get enough rest, that helps.
Taking care of myself really needs to be my top priority, in dealing with my spouse. When I get tired, my brain doesn’t work well, and of the two of us, I’ve always been the more functional — by a lot. I’ve been their caregiver, pretty much, for nearly the whole time we’ve been together. Their health has often been bad — especially their mental health, and after a serious neurological illness they had back in 2007. They’ve got a ton of history behind why they’re so mentally ill, and there’s plenty of reasons why they have the issues they do. Panic. Anxiety. Depression. Paranoia. Verbal aggression. A real roller coaster of emotions — with very little calm in the meantime.
Does it get old? Oh, you betcha. But they’re the love of my life, so you take the bad with the good.
And you take care of yourself.
So, this “vacation”, I need to be really clear about what I will and will not do. I need to not bend over backwards for them, just because they’re on vacation and think they should be treated like royalty. They’re not the only person who deserves a break, and I need to get some rest, too. In some ways, coming home from Monday to Wednesday is going to be a real relief for me. I’ll have the house to myself, I’ll be able to eat whatever I like — actually much healthier than how my spouse will eat. And I’ll be able to get to bed at decent times without that late-night drama they love to stir up.
So, it’s all going to work out for the best, I believe.
I just have to remember that my spouse is actually impaired in some significant ways, and I need to adjust and adapt and plan ahead.
And not get my hopes up for things that have never happened before, and will probably never happen, period. Like getting on the road at the pre-agreed time. Or having a low-key and very no-nonsense sort of trip.
The main thing is that I find a way to really enjoy myself, take care of myself, and actually get some rest. The condo where we’re staying has three floors, and I’ll be downstairs in a quiet, dark bedroom with couch and desk and its own bathroom, while my spouse will be up on the top floor. It works out well, and it leaves room for both of us to move at our own paces and have some freedom from each other. We’re both getting older and a lot more set in our ways — and a lot less willing to compromise.
More rigid? Yes. But also more discerning, and not so willing to give ground on things that really matter to us personally.
I think a lot of couples find this as they get older. They either split up, or they stick together and find a way to peacefully co-exist, whilst pursuing different interests that are all their own. I know I’m at that point in my life, and it’s not worth hassling over. It really isn’t.
So, I just need to take care of myself and have the vacation I want. Whatever my spouse does, is on them. No skin off my teeth. Not if I don’t let it.
I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.
I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.
Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.
Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.
The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.
I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.
Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am not exposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.
Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.
So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.
That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.
Anyway, that’s one example of things not working out as planned, and it being okay.
Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.
Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.
So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.
I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.
So, it’s back to using the tools I was working with before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it. I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.
So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.
Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.
Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.
Now, to go for my morning walk in the woods.
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.
A really interesting thing has been happening with me, lately. It’s actually been unfolding over the past six months or so, when I think about it. More and more, I’m piecing scattered parts of myself back together. Most importantly, I’m becoming increasingly aware that there are pieces of myself I need to piece back together. I’m starting to remember things I used to love to do, things that used to be part of my everyday life, that I couldn’t do without… but suddenly became “pointless” after my last fall.
In particular, mindfulness and meditation are back. And I’m really focusing again on the re-development of the abilities and the interests that keep me focused, centered, and going strong. This return is big. It’s huge for me.
Now, it might not seem like that big of a deal. After all, everybody loses motivation, now and then. Everybody goes through ups and downs, shifting in and out of specific interests. Why get so worked up?
You have to understand — my shifting away from mindfulness and meditation wasn’t just a flight of fancy. It wasn’t just me getting distracted by other things and taking a break. When I got away from it, I not only got away from it, but I pretty much removed it wholesale from my life.
To understand the full impact of this, you have to comprehend what a significant part of my life mindfulness and meditation were, for many, many years. I had always been a thoughtful kid, growing up. Philosophical, even. I spent a great deal of time contemplating life and its deeper meanings, and I didn’t let the fact that I was young stop me from pondering age-old things. I would meditate on mountain vistas and campfires, commune with nature on solitary walks… be one with the universe while sitting and watching dust particles dance in a sunbeam.
In retrospect, I believe this tendency to contemplate and meditate arose naturally from my difficulties with everyday activities that other kids engaged in. I had trouble with my coordination — real balance problems, at times — and my senses were pretty sensitive when I was tired, which was a lot of the time. I never really fit in, like a lot of kids. But unlike other kids, who went out of their way to remold themselves to they could fit in better, I withdrew to a solitary, almost monk-like life of minding the smallest details of life and extracting meaning from them.
Into my adult life, too, I spent a tremendous amount of time contemplating and meditating, communing with the cosmos whenever I could. I found tremendous comfort in that, a sense of connection that eluded me in everyday life with other people. External situations that others found easy tended to baffle me, so I focused my energies on cultivating an inner life, an inner view of the world that was consistent with my heart and mind. I spent my free time reading and journaling and meditating and exploring spiritual matters. I wasn’t heavily invested in “the things of this world” because I had other interests in mind — namely, my connection with that still small voice within.
It served me well, too. On the surface, spending a lot of time contemplating and meditating might seem like an interesting hobby, but what good would it really do a person in the real world?
Actually, it helped me tremendously, as I developed a practice I called “modified za-zen” where you maintain your mindful composure and presence of mind in the midst of chaos. It was a real “warrior stance” I took – being impassive and composed even in the face of full-on attack or a schedule packed full of highly stressful tasks. That practice enabled me to play a significant part in many heavy-duty projects at work, and it molded me into a truly competent team player who was a rock and a cornerstone of the groups I was with. It cultivated in me a presence of mind, a peace of mind, that was the envy of my spouse, my friends, my co-workers. Very little could ruffle my feathers, when I was in the zone. I wasn’t always in the zone, to be sure — I had various issues that would come up, no doubt related to my neurology, but that practice of mindful awareness and intentional composure made all the difference in some very tough situations.
After I fell in 2004, that changed.
Broken Bokeh by WatchinDworldGoBy
Suddenly, I couldn’t be bothered with that meditation stuff. And contemplation? Well, that just seemed like a huge waste of time. As for my composure at work and at home, well, who the hell cared about that anymore? I “decided” I was sick and tired of putting forth the effort to hold myself together. I “decided” it was high time that I had a break and stopped holding myself in check. There was a part of me that suddenly felt like making the effort to sustain my calm was stupid and weak. It just didn’t want to be bothered. It told me I was “choosing” to stop controlling my behavior and stop monitoring my moods and state of mind and actively managing them, but the truth be told, I just couldn’t. The part of me that had used to do that wasn’t working the way it used to. It couldn’t.
It was like the responsible, mature part of me that had good sense about keeping myself centered and sane had been shattered. And in its place I found a selfish, self-centered, self-pitying creature who had a hair-trigger temper and frankly didn’t give a damn what anybody had to say. If that part wanted to act out, it acted out, and it had the best of excuses for doing so. The part of me that had long been conscious of how vital it is to keep centered and calm and have mastery over my behavior, didn’t fully recover from that fall. It was like it got knocked out for a lot longer than my lights went dim, and while it was out, it got pushed out of the way by the other part of me that felt like any attempt at composure was cramping its style.
Whereas I had already spent many, many hours… indeed, many months of my life, if you add up all the hours together… cultivating an equanimity that was the envy of many friends and co-workers, starting at the very end of 2004 (I fell at Thanksgiving), I moved pretty rapidly away from that old practice of mine. And within a year’s time, I was in trouble. Deep doo-doo.
Of course, all this was pretty much invisible to me and my broken brain. I told myself, I had other things to do. I told myself, I had to focus on “real” things. I just let the meditation drop and walked away. And whenever some anger or frustration came up, instead of checking in with myself to see if there was any valid reason for me to act on it (there usually wasn’t), I indulged every one of my whims with a self-righteous self-justification that seemed perfectly logical to my broken brain, but logistically made no sense whatsoever.
The result? A lot of headaches at work, a lot of trouble at home, increasing money issues, relationship issues, and health issues. It just wasn’t good.
But all the while, as my struggles compounded, there was still that raging voice in me that was convinced it had every reason and right to accommodate every single negative impulse I had. Seeing the connection between my feelings and my behavior and the consequences was next to impossible, in my diminished state. I had literally forgotten that it mattered, for me to get a grip.
Okay, enough background. The good news is, I’m coming back. Those old monitoring parts of me that I had worked so hard to cultivate, are coming back online. It’s more than just feeling better and more alert — I AM better and more alert. I’m able to wake up in the morning, I’m able to engage more fully throughout my days, I’m able to step back and take a look at my moods and my behavior and choose the sorts of responses that will work in my favor, not against me. I’m not just on this mad auto-pilot drive; I’m actually able to slow down and contemplate my life and find real meaning in it again. I’m also able to relax — really relax. It’s pretty amazing.
And as the time passes, with each new success which I fully realize and appreciate, I build up my stores of lost self-regard, self-esteem, self-respect. I also build up my stores of self-control, and I can actually live without being right about everything, no matter what the costs to my relationships. I am better and better able to choose my responses, and even when people around me are acting up and seemingly going out of their way to provoke me, I’m able to pull back from the engagement, figure out what I want to do and say… and do it.
Yeah, it’s pretty amazing. What amazes me even more, is that I went for years without having this as a regular part of my life. It amazes me, I thought I could do without it.
So, I’m enjoying this. Thoroughly. I’m watching my life with a whole new interest, and I’m learning a lot. In a way, I feel as though I’m re-learning skills, like someone re-learns to read and write after a head injury. Like someone re-learns to walk and talk after a stroke. Like someone with amnesia who starts to remember their name, their family, their home, their work… Like someone who wasn’t even fully aware of having amnesia, who suddenly sees a world they once knew, and isn’t sure whether to be elated or dismayed. In truth, it’s a little bit of both. I’m elated that bits and pieces are coming back to me. But I’m also dismayed that I lost sight of them for so long.
It feels very odd to be writing this, and to be realizing it, but I guess I was a lot more impacted in some ways than I really realized. But now that I’ve “got” it, I can move forward. Progress is good.
What really piques my interest is thinking about what got me back on track. I think one of the big things that set it in motion, was taking care of my body — starting to exercise regularly, and waking myself up with exercise and stretching, rather than two strong cups of coffee. That, and stretching and consciously relaxing before I go to sleep at night.
I actually think that I developed a hefty dose of PTSD, in the aftermath. Not right away, not from the fall itself, but rather from the progression of small disasters — bite-size catastrophes — that have dogged me for years. The collapse of jobs, the dramas at home, the startling surprises that I didn’t see coming, the encounters that went poorly or that carried some sort of hurt with them… My sympathetic nervous system has been on high alert for quite some time, now, and it’s taken a toll.
But since I started making a point of caring for my parasympathetic nervous system — bit by bit, exercise by exercise, breath by breath — I have been able to feel a difference in my whole system. Sometimes it’s subtle. Sometimes it’s dramatic. But it’s there. Conscious breathing has played a significant role, of late.
It’s good to be getting back. I’ve been toughing it out just about all my life, but this past 5 years has kicked my butt, to the point where toughing it out is no longer the best solution I can think of. Now I have other ways of dealing with the crises and dramas — ways which involve really basic care of myself, basic care of my system, and attending to the details of my life with a much greater depth than I’ve been able to manage for a number of years.
But now I am remembering who and what I am. I am remembering what matters most to me. I am re-learning the wonder and magic of paying attention to little things, and seeking deeper meaning from my life than what the television has to offer. I am re-learning the discipline of just sitting and observing what’s going on around me, rather than diving in with the intention of “fixing” what isn’t mine to fix. I am re-learning the fine art of calm in the midst of storms, as well as making my way in the world in my own individual way.
I wish I could say it’s coming naturally to me. I used to be able to say that. I used to know it and feel it. I seem to recall that I used to not have to really work at it. But I’m not adverse to work, and if extra effort is required to get me back to a place where I can piece back my life into a state of quiet dignity and genuine happiness. then so be it.
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.
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.
Even among the properly trained, it can be difficult to understand exactly what is going on inside an injured head. At every turn, if you present well, outside your head it is assumed that you are well, that all is well, and that all will be well.
But inside your head, there are no such guarantees.
Inside your head, nestled amongst the tens of thousands of memories of what was supposed to go one way, but went another — with or without warning — lie slumbering catastrophes, just waiting to be awoken by sudden laughter or applause…
All the screw-ups, all the mess-ups, all the misspoken words, the misunderstood directions, the confusions, the communication breakdowns, the confabulations, the failed connections… no matter how small they were, the simple fact remains that things did not go the way they should have. No matter how hard we tried, things did not work out. And there were consequences — we tried like crazy to avoid them, but it just didn’t work out. We may not remember the specific details of each minor catastrophe, but the residue of each and every one is very much a part of who and what we are. Our brains may not remember each detail, but our bodies recall very clearly the experience of being wrong or mistaken or confused all too well.
Inside your head, sandwiched between the best-laid plans and the rock-solid goals and the shining hopes and the lifegiving dreams, the condensation of nagging doubts builds up. There is no true certainty with brain injury. There may be a sense of certainty, but the reality all too often is something very different. They trickle in, these well-versed, well-founded doubts — liquid sabotage — from the pressure cracks in your system, the pressure cracks in your life, seeping in through the fissures to accumulate in the crevices in the foundation you’ve built your life upon. When the weather is warm and pleasant, all is well. But when it gets cold — a sudden snap, perhaps — the liquid expands like icy water freezing in sidewalk cracks, and it separates the pieces of your foundation like so many pieces of stone or brick or cement forced apart by sudden ice.
Outside your head, everything looks fine. Everything looks good. Until you snap. The pressure builds up too much — too little sleep, too many demands, too much long-term fatigue, too much cognitive deficit, too many questions, too much to do, too few resources left over at the end of the day to manage it all. Too much… too. And you lose it. Go off the deep end. Pitch a fit. Fly off the handle. Over what? Sometimes it’s hard to remember.
And then it hits the fan. You’re not the only one in the line of your own fire. And the others who bear the brunt may or may not be accommodating. Chances are, they’re not. And a brick pops out of the wall. A chunk of your foundation cracks off. The mortar between the stones in your carefully constructed retaining wall starts to crack and crumble.
Maybe the people you lost it around remember other times you’ve done this. Maybe they don’t. If they do remember, chances are they’ve tried to forget, tried to give you the benefit of the doubt, tried to make allowances or exceptions. Tried to give you another chance. But they keep giving you second chances, and still… it comes back to this.
Maybe the people around you don’t remember you losing it before. In which case, depending how long they’ve known you, you’re either the benefactor of their interpersonal largesse and allowed another chance or special exceptions… or you’re marked as someone who isn’t quite right and can’t quite be trusted.
Or maybe the problem isn’t anger at all. It’s not temper. It’s not tantrums. It’s not violent outbursts. It’s something much less dramatic, but all the more sinister — unreliability. Perceived flakiness. An apparent inability to do simple math. Or spell. Or use proper grammar. Perhaps it’s failure to deliver. Over-promising and under-delivering.
The last one is the most sinister of all. It makes you look like you’re either completely out of touch with reality or — worse — a liar. One slip, and you’re suspect. Another, and you’re a marked person. One more, and you’re written off. Yet another, and you’re doomed. The world can tolerate a lot of variability, but the world of work and accountability is brutal on those who fail to deliver what they promise. It’s sink or swim. Life or death. With the economy the way it is, and the global marketplace as competitive as it is, there is even less margin for error, than there was 30 years ago.
It’s not just the case for the workers of the world — also for the spouses, the friends, the family members, the community members. There’s just not that much tolerance, anymore, for those who don’t measure up. Perhaps there’s never been. But in this world we have made, the stakes are much higher. 500 years ago, you could retreat to the forest and survive. Now, nobody really remembers how to live on the land. We are much more interconnected and interdependent than ever, yet our tolerance for variations in human expression has not kept up.
We have invented a world for ourselves that has no room for many of us.
Where, then, shall we go?
It’s the only place that’s safe anymore — and that’s a relative statement, in any case. After all, within is where you store the collective memories of all your screw-ups. It’s where you wrangle with the very real recollections of your own failings, the collected experiences of your shortfall. It’s where you have to live with yourself, like it or not. It’s the one place that who you are and what you are — and are not — capable of, is very clearly known. Except when it’s not.
Within is a haven that has significant limits, to be sure.
But within, at least you have a chance to sequester the truth of yourself and your limits in their own company, and they can keep each others’ confidences in the silent corners of your mind. No one needs to know, just what a hard time you’re having these days. In fact, no one wants to know. They have their own troubles. And how they have their own troubles. Nobody likes to think others have troubles nearly as bad as their own.
Funny, how people are like that. If you step forward and ask for help, you stand a better chance of being smacked down than given the help you need. You stand a better chance of being reprimanded and chastized, than assisted, even if you ask for specific kinds of help. “Everybody has problems with something… Look at you – you’re lucky! You can still walk and talk! You still have your health! Some people have it really bad — at least you don’t have MS or Cancer or Parkinsons or Alzheimers! Stop complaining and just live your life.”
Buried in the litany of “real” problems that other people have, there’s a common theme, a recurring chorus, that goes, “I’m in pain too, but I don’t vex the rest of creation with nagging pleas for help. If I can suck it up, you can too. Get with the program, cowboy, and just deal with it. Oh, by the way, have you paid your taxes yet?”
Looking without for assistance is a tricky thing. You may be better off, not even trying. If it’s logistics, like staying alive during a long, cold winter, then yeah – speak up. But if it’s “higher” functioning stuff like memory or fatigue or distractability or behavioral issues, chances are you’re better off keeping your own confidences.
You may wish to keep the bad news about the havoc in your life to yourself. I do. And it’s working out better for me, than when I told people the whole truth about my situation. I’ve learned to keep my mouth shut about it, for the rest of the world simply does not, cannot, and will not understand. Most people have their own troubles — ironically, much of it their own making, due (among other things) to poor time management practices, crappy sleep hygiene, and bad living habits. It’s not neurological with them. It’s either mental laziness, lack of character, or addiction to drama. They create their own overwhelm, and then they liken their situation to mine.
Ironic, to say the least. I could teach them a thing or two about time management and improving performance. The fact that I can get as much done as I do, despite the limits I’m dealing with, says a lot about how-well designed and oiled the “machine” of my life is. I should bottle my system and sell it. I’d be rich, if I could. But most folks I know are heavily invested in their self-created drama, they’re getting by okay, in spite of their chaos, and they don’t see anything wrong with it. Me trying to get help from them to fix something they don’t think is a problem — somethign that they think is just how life is – when I know differently — is like trying to outlaw drinking on a cruise ship.
Yes, most folks have havoc enough — self-created as it is. And they can’t for the life of themselves fathom why others (whom they assume have self-created their own havoc, just as they have), are whining about needing extra help getting on with their lives.
Outside the mind, the odds of getting your needs met as a traumatic brain injury survivor (or as a significant other of one) are slim to none. Money is tight, after all. Only the most severe and obvious cases stand much of a chance of qualifying for help.
But there’s always within… When you keep your own confidences and you hold your own counsel in the privacy of your own mind, you have a chance to make right the very things you know for a fact are wrong. You can work with your demons on your own terms, in your own time, without the messy meddling of others who may say they understand, but really don’t. Within, you have a chance — if you know yourself and your situation for what they truly are — to negotiate and navigate and accommodate and mediate… to adjust and tweak and compensate. And just get on with your life.
Outside, there’s precious little that anyone else can do for you. Sad, but unfortunately generally true. People don’t know shit about brain injury. Nor do they want to. They’ll glance at the billboards and skim over the ads in the magazine, and get on with their busy, havoc-filled lives. And never give it a second thought.
But within… there you have a chance. Only you know just how messed up things can get. And only you can identify exactly what is wrong. Only you can know for sure if the results are what you planned. The rest of the world thinks you meant to say or do such-and-such. Only you know the truth — that what you did or said was anything but what you planned and intended.
Havoc… catastrophe… conundrum… confusion… Screw-ups… Failure… teetering on the brink of collapse…
Nobody truly knows about it, but you.
So, what will you do?
Over the past year or so, I have been giving a lot of thought to head injury survival through the ages. Getting hit on the head, knocked out, attacked, and generally brain-damaged is about as regular a part of the course of human history as, say, losing your teeth or having a part of your body chopped off.
Think about it — dental care as we know it today is a relatively recent development. Used to be, a blacksmith was the one with the tools to pull a tooth — or you did it yourself with a heavy object slammed against a bad molar, or a string (tied around the offending tooth) and a slammed door. And it’s easy to forget in this convenient age, that once upon a time, people used actual tools to get their work done — lots of them sharp — and lived under conditions that were harsh and unyielding. Chopping off part of a finger — or a whole finger, for that matter — losing part of your foot to frostbite, and/or having a piece of your ear bitten off in a bar fight, happened with a lot more frequency than we 21st century folks recall.
Think about it — once upon a time, wars weren’t fought in faraway lands by trained, dedicated armies that only wanted to vanquish each other. Time was, raiders and looters and rapists and pillagers roamed the seas and the countryside, doing as they pleased to whomever was there. What’s more, in the middle ages, just about the only way am ambitious young man who wasn’t the firstborn in his family could get ahead (other than by taking up a trade or currying favor with some overlord) was to sign on as a mercenary with a local feudal lord and maraud his way to fame and fortune.
In our cozy, warm homes, with only the television and the internet to connect us with a reality outside our own, it’s easy to forget just how rough life has usually been on the human race. And it’s easy to forget that traumatic brain injury is not something that is unique to football players, boxers, and survivors of car accidents and falls. We look at statistics about brain injury — how many of them come from sports and falls and accidents and assaults — and we shake our heads, wondering what we can do to make the world safer — both before and after the accidents.
But think about it for a moment… how safe can we reasonably expect life to be? Granted, nobody wants to have their brain rearranged by unexpected trauma. Nobody actively seeks out a cognitive-behavioral condition that can be not only disturbing but downright disabling. Nobody plans to be at a perpetual disadvantage in life. But it happens.
And it’s been happening for a long time.
So, what do we do?
Certainly, we can try to prevent as many head injuries as possible, with helmets and education and training and good sense. But there’s just no way to live your life freely, if you’re on constant alert about what might happen, and what that might mean for your long-term prospects.
As an old, old relative of mine says, “Life is dangerous!” To try to limit the dangers, also means trying to limit the full range of human experience. To live fully, you need — on some level, anyway — to accept the possibility of harm, damage, danger, injury. To live fully, you need to walk — head up, shoulders back — into the face of some pretty scary stuff, and be prepared to deal with the consequences.
To live fully, to walk fully upright in the world, you have to be a warrior.
You have to be ready, willing, and able to look the world in the eye with a resolve that says, “I will not bend before you, I will not break beneath you, I will not yield the ground I have won. I will not falter and I will not fail, until I have reached my final destination. The only way I am going to fall short is if I fall permanently, period.”
To do this, to think this, to live this as a recovering survivor of brain injury (or many other kinds of injuries, including PTSD), you must be a warrior.
Now, I’m not saying everyone should pick up a sword or a spear or a gun and march out into life swinging and shooting. I’m not saying that you have to be on the defensive or the offensive at all times. Far from it. According to dictionary.com, a warrior is someone who is
1. a person engaged or experienced in war(fare)
2. a person who shows or has shown great vigor, courage, or aggressiveness
Vigor, courage, aggressiveness… yes. Those are key. And they are also predicated upon the experience of war.
To be a warrior, you have to realize and accept that you are engaged in war. Not only war in the classical sense, but:
War 4. active hostility or contention; conflict; contest
For those who struggle daily with TBI (or PTSD) in a world that doesn’t give a damn about our struggles, this is not a huge cognitive stretch. We are constantly faced with active hostility or contention, conflict, and contests — whether those come from within, or without. In my case, I would have to say the source is frequently more internal than it is external, but that doesn’t make it any less challenging. If anything, it makes it moreso.
Sometimes walking through the world without acting out, without attacking, without leaping in to “defend” yourself from a mis-judged situation takes more warriorship, than striking out. Being able to stand your ground… to hold your fire… to be fully present in a moment which threatens you on every level, without flinching or fleeing… that takes true strength, courage, and vigor. And mastering the self, learning to calm and/or disregard the constant chatter that goes on in our rewired brains… well, that takes a good deal of aggressiveness.
Not against the rest of the world (tho’ sometimes that’s required), but against the inner impulses which impel us to flinch and flee and fly off the handle. It takes monumental skill to stand when you want to bolt. It takes determination to listen, when you’re just dying to shout. And it takes all you can give, to walk, when everything in you is telling you to run.
Now, don’t get me wrong. I’m not recommending that everyone just be 100% okay with the after effects of traumatic brain injury or other tragic traumas. I’m not saying we need to just sit back and take all the crap the world has to throw at us. Far from it. What I’m saying is that we as recovering survivors need to develop the inner resources to be our own people, to stand our own ground, hold true to our values, and not be diverted by externals when they keep us from our ultimate goals.
We need to be warriors in the truest sense. To walk our own paths, wherever they may lead us. To know ourselves for what we truly are, not what the rest of the world says we are. To do what must be done to protect ourselves and our lives and all we hold dear. And whatever route we take, it must be our own, and we must be loyal to the True inner voice that compels us, while learning to discern and dismiss the internal chatter and endless distractions which strive to pull us off our path.
Only we can achieve that. But when we do, we know it is our own. We have earned it, we have won it, we have paid dearly for it. And nothing and no one can take that from us.
One of the things that can make TBI particularly difficult, in the ensuing weeks, months, even years, is anger issues. Rage issues. Flying off the handle and attacking others for no good reason that they can see.
There are a lot of reasons this happens. Some of them are:
- Fatigue – your system is compromised by too little sleep and/or too much activity (with me, the two go hand-in-hand), and you don’t have the energy/wherewithall to stop yourself from going off
- Fear – there’s nothing like a sharp spike of adrenaline, combined with anxiety and fear to set you off. Fear has a way of clouding your judgment, so you not only under-think situations (from fatigue) but you also overreact to the circumstances (which may or may not be true).
- Frustration – when you’re trying to get something done/said/understood, and it’s just not happening, no matter how hard you try, patience wears thin — especially with yourself. My frustration tends to be directed inwards, though it also gets directed outwards. But the inward-turning kind is actually a lot worse for me. It makes me mean and aggressive. The worse I feel about myself, the angrier I get with life in general, and the more I tend to blow up.
It certainly doesn’t help that my brain gets into an uproar and starts getting into a biochemical soup drama, so that even if I wanted to think straight, I can’t. The constant restlessness of my brain, coupled with the toll that agitation and fatigue take, can combine for a pretty potent mix of explosives.
So, what can I do about it?
- At a very minimum, be aware that I’m angry. It often feels like something completely different — it feels like I’m just revved, and I don’t recognize the emotional piece of it. It may sound simple, but realizing that I am actually angry is a big challenge for me.
- Realize that my anger does not necessarily make sense to others. What I’m thinking and feeling may be entirely unique to me.
- Realize that my brain may be sending me wrong signals, and the surge of emotion that’s coming up may be simply a biochemical response by a physical system that is WAY overloaded and highly sensitive.
- Remember that the long-term effects of a blow-up are probably not worth the satisfaction I get from venting. No matter how justified I feel about my anger, it can do much more harm than good. I have to think about whether I want to spend the next days/weeks/months patching up the damage I do to myself and my relationships with others, thanks to uncontrolled anger.
- Keep myself in check. No matter how justified I feel, the more revved I get, the more I need to step away. I need to do whatever I can to remove myself from that situation, before it escalates and turns really nasty.
It’s not a perfect process, but it’s something. It’s an ongoing thing, and I’m far from perfect. But ultimately, life has a way of teaching me the lessons I need to learn, so if I just keep at it, eventually I do make some progress.