What really gets lost

At a keyboard, I find my relief

So, I have been noodling over the conundrum about why people don’t seem to A) believe me when I tell them I’m having a hard time, or B) really get the extent to which I have to grapple with my issues.

Maybe people just don’t believe that it’s possible for someone to be as functional as I am, and have all the issues I say I have.

Maybe people just don’t know what it’s like to have to hassle with this crap, day in and day out.

Or maybe they figure that if I’m not doubled over in pain, or stammering and apparently struggling for words, or not having visible trouble, then I must be fine. If I don’t look like the kind of person they’ve been trained to look for, then I must not be that kind of person, right?

Uh, OK. I mean, the only reason I reach out for help, is because I genuinely trust that others have the ability to help me. And then they turn out to not realize the actual extent of my issues, and they can’t help me. And I look like an idiot all over again, putting my trust in people who never earned it, to begin with.

If I had my ‘druthers, I’d just stick to my own path and leave everyone else behind. I do appreciate and care about everyone who stops by here to read what I have to say. At the same time, I have such a difficult time dealing with real-life people who love to talk and interact. They do it out of friendliness and comaraderie. They do it out of intrusiveness and neediness. They do it for a million different reasons. And it makes me nuts. Because I have such a hard time following along. I feel like I’m being dragged through the mud. And at the end of each and every day, I am so exhausted from working at keeping up.

Just so exhausted.

It’s not that I’m anti-social. I really do enjoy people. I just get so tired, so turned around, so confused, so frustrated. And the harder I work at it, the worse I become at all the social stuff. Open mouth, insert foot. Oh no – not again. It’s really demoralizing.

And my neuropsych wants to know why I said I have to be ON when I visit them.

They want to know why I used to fear and dread going to see them. I still do, now and then, but it’s much, much less than it used to be.

They wonder why I have been wracked by fear and anxiety at the thought of walking into their office and interacting with them.

Yeah, it’s all that interaction and talking and processing. They’re talking. I’m responding. I’m telling them about things, and they’re summarizing what I say, and I’m not thinking quickly enough to correct the trajectory their ideas are on. And they think that I’m saying something entirely different from what I mean. And all the while, I’m feeling like a block of wood, unable to really talk, unable to speak up, unable to set the record straight.

Good grief.

Oh, screw it. I’m tired. I don’t want to think about this anymore.

What gets lost is everything that doesn’t show up in Technicolor-Surround-Sound.

What gets lost is everything that can’t be put into words in a simple, concise sentence to be parsed out and comprehended.

What gets lost is the fact that I am struggling, that I’ve been struggling for years and years, and I haven’t been able to express it in words to anyone who is able to understand — and possibly help me.

That gets lost — and me along with it.

Unless I get time by myself. With the written word. Away from the talking. Away from the frustration. Away from the disappointment that — yet again — I’ve fallen short of what I wanted to say and do, and here I am… just a shadow of the person I seem to think I am.

Like I said, I’m tired. Enough for one day.

Enough.

Tomorrow I will continue. Tomorrow… onward.

Just not right now.

Paying attention. Closely.

I woke up early today – 5:30. I just woke up. It’s just as well, because I have a lot to do today, and I want to make some progress with some personal projects, before I launch into a lot of busy-ness. I’m going to a wedding later today, which I’m both dreading and looking forward to.

I’m looking forward to it, because there will be a lot of interesting people there, and I’ll have a chance to meet people from all over creation who I normally don’t get to meet.

I’m dreading it it, because there will be a lot of interesting people there, and it will likely be a non-stop social event.

I’m going alone, because my spouse is sick and can’t sit for any period of time without having a coughing fit. There’s no way they’re going to make it through a ceremony without interrupting everything. Medicines don’t work. Cough suppressants don’t do the trick. It’s better to not even chance it. They’ve been sick for weeks, now, with this virus that’s going around, and it’s no friggin’ fun for them. Nor for me. It’s pretty wearing, to watch the one you love struggle with being sick with no lasting relief in sight.

Anyway, I am gearing up for the day, running errands and taking care of business beforehand. The ceremony isn’t until the evening, so I have all day to get things organized, as well as take a nap – that’s going to be important.

The whole social thing is a source of stress and anxiety for me. It’s been a source of stress and anxiety for me at work, for the past couple of weeks. Everyone at work seems so … together. They know how to focus their statements and not trail off or wander around with their thoughts. It’s wild. How do people do that? It’s like they don’t have any other competing ideas rattling ’round in their heads — or they know how to organize their thoughts really well.

I, on the other hand, feel like pretty much of an idiot. I ramble. I blurt things out. I don’t make a simple statement that people can react to. I’m kind of all over the map at times. I feel like I’m swimming in this vast sea of information and trying to pick and choose what to talk about is a challenge. I guess I’m just a lot more like a sponge, taking it all in and putting it in order. I suspect that because of my past experience, I just have a lot more information to integrate — and my present experience is like drinking from a firehose, where all the information around me is just rushing in and flooding me out.

Crazy.

Well, I wanted a chance to work on the social aspect of my life… the time-keeping side of my life… to improve my ability to productively and capably deal with people. I asked for it, and now I have to learn it.

I can do this. I can do this. I keep telling myself this. Sooner or later, I’ll believe it. But right now, it doesn’t much feel like it.

So, I’ve got to get some supports together. Read some articles on how to organize your thoughts… strategies and ways to make the most of what I have, instead of getting all freaked out and worrying like crazy over every little thing. The worst thing is getting concerned… and feeling like there’s something wrong with me… that I’ll never be able to do this… that I’m defective, broken, a loser….

But if I can get some ideas, some training, and I can practice… I stand a chance of turning things around. I can’t get all bent out of shape about a temporary state of being. I have to remember where I come from — I’ve been working with computers for a long, long time. And I haven’t had to actually communicate with people, per se, as much as I’ve had to interact with machines. Machines are easy. There’s no timing involved. There’s no awful consequence if you mis-speak with a machine. It doesn’t care. It just tells you “No, that didn’t work – do you want to try again?” And you can try again.

But with people, it’s a different story. And at work, I feel like people are looking at me oddly because I’m not as fluid as I’d like to be. Plus, I’m kind of muttering to myself when I’m stressed and tired. I do that, when I’m overwrought. So, I guess I’d better learn to rest up and collect myself when I can. Because it’s no good creating the perception among folks that I’m just not up to the task.

Or that I’m crazy.

If only people had just a little bit more imagination and could accept differences among people. But honestly, they generally don’t. I think people tend to be somewhat neurotic and insecure about themselves, so they look to other people to make them feel better. People generally look to me to feel better about themselves, so I think they just expect me to be all together. Back before I had my TBI in 2004, I was a rock. I was steady. I was the kind of person you could go to and feel better — instantly — about yourself. I’m not bragging. That was just my MO. It’s how I rolled.

Then after 2004, all that fell apart… and it’s been a real struggle for me to get back at least part of that — for myself and for others.

So, this new job is chock full of new opportunities, and I’m paying close attention to where I need to improve and learn new things. Organizing my thoughts while I’m speaking is one of the things I need to study and practice. I really need to work on this. I get flustered and lose my place. But I’m in a position now where I’m going to be in a lead role in projects, so I can’t let that persist. I need to step outside the old comfort zone of hanging at my computer, and go talk to people. Connect with them. Make the rounds. Catch up and check in. Just get out of my cube and network.

And work on my thought organization. Because people are starting to look askance at me. Am I being paranoid? Maybe. I’ve got to get that out of my head and just learn some skills.

I’ve got to learn other things, as well. Fortunately, I can learn a lot of this stuff on my own time – and I’ve got a system in place for learning it. I’ve collected a bunch of details about the projects I’m going to be working on, and I am going to go into the office a few hours early each day to focus on memorizing them. Product lists. Feature lists. Process flows. Flow charts… Software I’ve used in the past, and now need to learn how to use better…. I know I am better at learning and retaining information, first thing in the morning, so I need to get into the office early and get a jumpstart on things.

The other benefit of going in early, is that I miss a lot of the heavy traffic, so I get there even faster.

So, that’s one thing I can do — get an early start to the day and spend the time focusing on learning what I need to know and do.

I’m already feeling better.

Here’s the thing — new job, new life. Totally new way of doing things. I need to give myself room to learn and grow — and really step up. For years, I’ve been working with systems, which I could only learn by sitting down in front of a computer and typing away, ignoring everything going on around me.

Now, I’m working with people, and I need to get into the flow. I need to gather information from different places and really study up. I can do that now. I can read much better, and I can retain information, and I have my tricks to help me remember.

The main thing is, not getting thrown by insecurity and anxiety and having that affect my credibility.

So, it’s good. It truly is. And it’s getting better.

Just updated – Communication Solutions for TBI

I just updated my section on Communication IssuesTrouble Being Understood in my Brain Injury Recovery Tools section.

If you’ve got anything to add that you feel is important or that you have found works for you, by all means, chime in!

Ignoring the symptoms to stay on the field

I’ve been watching the video of Malcolm Gladwell that I found on The Concussion Blog a few days ago. I had some time to watch the second half (I started the first half a few days back), and it is good — well worth the hour it takes to watch.

As a point of entertainment — and also a telling view into the landscape at U of Penn, which continues its football program, even after the inexplicable suicide of one of their football players who had no history of depression, but did have CTE, as evidenced in a biopsy of his brain after death — at 43:00 watch the academic try to figure out what to do at the end of Gladwell’s talk. At first he walks up to the podium and sort of stands there. Then at 43:12, he looks around and realizes he’d better start clapping with his peers (who are standing up to clap), while also stepping away from Gladwell, and not making eye contact. My vivid imagination tells me he’s clearly worried about the flak he’s going to take with his administration for having invited this upstart (from NYU, no less) who is publicly taking the university to task for their negligence in addressing football-related injuries, including CTE.  Who knows, maybe he’s seeing his whole career flash before his eyes…? He looks around a little bit, as though seeking some sort of direction from someone in the audience, then stops clapping and steps up to take control of the podium.

Good theater…

But also a telling look into the sorts of behaviors that perpetuate the prevalence of football in this country. Granted, I grew up loving football and playing it when I could (though I was more interested in track and cross country than football as a team sport). And up until I realized that my significant life/money/relationship issues I was dealing with were related to the concussion I sustained 8 years ago, I loved watching players run into each other and rough each other up on a regular basis.

I just loved it.

Just like I loved playing it when I was a kid, and I played rough when I did. For the record, I also played rough in lacrosse and soccer, when I participated in them, and I had no qualms about making physical contact, even in sports where that wasn’t supposed to happen. I admit it. I was a bruiser. And it turns out, I bruised myself, too.

A lot.

What strikes me about the Gladwell talk is how he describes Owen Thomas, the Penn player who hung himself after “a sudden and uncharacteristic emotional collapse (at 39:16)” was never diagnosed with a concussion, and was “the kind of player who might have ignored the symptoms to stay on the field” (at 39:40 of the video). Who knows – maybe it cost him his life, to ignore the symptoms he should have paid attention to. Maybe it contributed to his CTE. The evidence isn’t as clear as people demand, but it’s still a pretty compelling correlation. Somebody who obviously sustained a ton of hits (sub-concussive or more serious — to the tune of about 1,000 each season), kept quiet about any pain or discomfort he might have experienced… and he never lived long enough to tell the truth about what more he may have been experiencing. That knowledge went to the grave with him.

But still there’s the CTE.

This statement, quoted from the New York Times, haunts me. Because on so many levels, that same kind of behavior is well evident in me. I don’t like to complain. I don’t like to draw attention to my aches and pains and difficulties. I don’t like to make much of my discomforts, which are myriad and seem to never end. That’s just how my life is. That’s just how things are. It’s all background noise to the rest of my life, and while I do try at times to mitigate the issues and head them off at the pass, after a certain point, I just quit trying to fix them and try to focus on other things which are more productive (and more interesting) to me.

I’m not the kind of person who loves to dwell on their misfortune. I’d rather do something about it. And if I can’t do something to stop it, then I just accept it, do my best to ignore it, and move on.

But what if that’s part of the problem? I know that when I fell in 2004 and smashed my head on those stairs – bam! bam! bam! bam! – the last thing I wanted to do, was draw attention to my injury. I knew, deep down inside, that I was hurt. But I also didn’t know how to describe it, I didn’t know how to communicate it to others, I didn’t know how to put what I was feeling and sensing into words, and I didn’t know if I should even be worried.

I just sat down for a little bit to recover, gathered my wits about me, then picked myself up and got on with my work. Like I’ve done countless other times while playing sports, after car accidents, after multiple falls (one off the back of a truck I was packing — I stepped back and misjudged the height and fell back (I didn’t hit my head, but I was definitely jarred and out of it for a little bit), after clunking my head on something or other. Just sit down for a little bit, wait till I can see/hear/thinking again, and then get up and get moving again — often at a more brisk pace than I’d been working at before.

The mechanics of this fascinate me. No way have I sustained as many impacts as long-term football players, but I have had my share of rough-ups, and each time I was knocked for a loop, I stopped, composed myself, then went on without mentioning the incidents or how I was feeling afterwards to anyone.

To anyone. Not my parents, not my coaches, not my teammates, not my spouse, not my coworkers. Nobody.

Because who would understand? Who would get it? They’d all thing I was wrong in the head and get worried, and then I’d have to navigate their worry and concern, which was even more disorienting and frustrating and confusing than the injury itself. And there was a very good chance they’d take me out of the “game”, be it life or a sports contest, when all I wanted was to be in the midst of it, playing my part.

I figured I was better off just dealing with it myself.

So, I kept it quiet. Until I couldn’t anymore.

Of course, it catches up with you. It always does. You think you can just keep pushing, keep going, keep moving, and nothing bad will happen. You think something bad will happen if you don’t keep up your pace. And to some extent, it’s true. You can get benched. You can get marginalized. You can get sidelined in a thousand different ways, perceived as “unreliable” by those who depend on you for Important Things. And then you’re not worth quite as much to the team as you were before. And you become expendable. And you can get cut. Fired. Disposed of. Because you’re damaged goods who just can’t keep up.

Retard. (sorry for the “r” word, it’s for illustrative purposes — it’s what people may say/think about you)

And today, I find myself in similar straits. I am exhausted from my business trip, and I haven’t gotten my strength back. I haven’t been sleeping, and work has been chaotic and stressful with so much going on. It’s good to be back in my own bed again and back to my regular routine, but I am wiped. Beat. And I still need to keep going. I have to catch up with a lot of things that have been waiting for me. I have to do my chores, take care of business, keep the joint running — and then some, as I make up for lost time.

I don’t feel like I can afford to take time off, to recover, to relax. There is simply too much to do. And so I put my head down, push forward, keep myself going with adrenaline and resolve and steely willpower…  and I am rewarded. I am rewarded by those who depend on me, who look at me and think, “Wow – they are unstoppable.” I am respected by those who look up to this sort of self-sacrifice, who admire this sort of lack of self-regard. And I get to keep my coveted position as a team member of a group that relies on me putting everything ahead of myself — and who know nothing of my daily sensory, neurological, and metabolic issues.

Yeah, I keep going. While I can. And then I crash. When I can. I try to get some extra sleep. I try to take time out. I try to catch up with myself as best I know how… but there’s always that element of self-disregard that comes into play, that willingness — eagerness — to ignore the less than attractive aspects of my life, so I can keep up my resolve and productivity.

In the face of this, the best I can do is be honest with myself and recognize when I’m upping my risk of injury. I can pause for a moment and check in about my state of mind and body, and see if I’m tense and uptight… then take a slow, measured breath and just relax and let the tension go.

This is something I’m working on each day, to improve — just being clued in to my state of mind and body, so I don’t get too intensely stressed and start acting out and losing impulse control (like I did yesterday in conversation with my team and a former co-worker, when I said some things about my current employer in the heat of emotion that I never should have said out loud). It’s the kind of awareness I need to strengthen and hone, because the alternative is not that attractive. And the nice thing, too, is that this practice of just checking in, now and then, to see “where I’m at” really does help me relax and feel more together, which is a great feeling to have when I’m in the midst of a sh*tstorm.

So, while I realize that I push the envelope and I tend to overextend myself, each and every day, I also have some tools I can use to mitigate the effects of that constant stress — I have an understanding of how my central nervous system works, that really helps me develop good strategies for coping. I have things I can practice in the course of the day to check in with myself and see if I’m starting to fray. I have an understanding of what constantly high levels of stress can — and will — do to your body and your brain. And I have the internet to read and study and develop my knowledge further, so I can keep myself on track with more strategies and tools based on recent research.

I need to stay in the game. I have to stay in the game. I can’t just sit out and not participate. I have too much riding on me, and I have too much to lose. So, I have to keep myself going… =I know it’s not good to ignore symptoms and stay on the field despite serious injury, but I also can’t let my injury stop me from living my life. So, I do my best to not ignore what’s going on with me — and with the knowledge I have, manage my issues and not let them stop me. It’s an ongoing process, learning to pace myself, and I’m discovering and developing new ways to do that so that can keep moving and keep engaged, not bail from the situation.

Stepping away for a moment to do something different, then coming back fresh.

Pausing a moment to see how I’m breathing, and take a relaxing breath if I need it.

Stopping the momentum for just a moment, so I can catch up with things and not lose myself in that momentum.

Really focusing on developing resilience and hardiness, and accepting challenges as a part of my everyday that are evidence of my strength, not my weakness.

These are all things I can do. These are all things I try to do on a daily basis.

Because I don’t just want to live. I want to live well.

So far, so good.

Yeah, I did that

Stylin’…

I’ve been working on my online portfolio for the past couple of days – the job search has made it obvious that I need to get something online that people can look at, so they can see the depth and breadth of what I’ve done.

I realized last night (yet again) that one of the issues I come up against, over and over, is that people expect me to talk at length about my work and what I’ve accomplished, and to be able to be a fascinating conversationalist with regard to my work.

But I can’t stand that stuff — all that talky-talky-talking stuff — it just sounds like so much fluff, so much grandstanding.

I’d much rather just do things. I can talk about them later, when they’re done. But then when I’m done, I don’t feel like talking about them anymore, so I’m on to the next thing that I want to do.

So, I never really talk much about what I do or have done.

The other thing that’s been a bit of a stifler, in this respect, is that I’ve often worked for companies where everything we did was highly confidential and proprietary, so I literally couldn’t talk about it. It’s a little like having been a spy or an under-cover operative. There’s only so much I can say, because I’ve worked on some very high-profile projects that had a lot of sensitivity to them.

So, I haven’t been active on the forums where people strut their stuff and show off their chops. I haven’t been a talker on a lot of the online communities that are about what I do for a living. Aside from the confidentiality issues, I literally haven’t had time — I put everything I have into my work, and at the end of each day, I’m wiped. I just don’t have the time or the energy for chatting with folks about this or that.

I just don’t.

So, I’ve been a little bit freaked out about what that means for my job situation. The conversations I’ve had with individuals — and the test I took that I did really poorly on — have not reflected exactly who I am and what I’ve done. There’s this disconnect between what I do and what people hear me saying I do, and I’ve got to fix that.

So, I built myself a website yesterday that will have my portfolio on it — screen shots and examples of all the stuff I’ve done over the years, so people can see it. I’m also posting details on what the projects entailed, what my biggest challenges were, what my greatest successes were and when I came up short. It’s a private website that no one can see unless they know the login and password, so I can talk about the confidential aspects of my prior work and not worry about it going out into the world at large.

AND people will be able to see what I do — and what I can do — without getting all stuck on my serious unwillingness to run at the mouth and be “emotionally intelligent” with the rest of the world.  So much of what we do, these days, seems to be geared towards making a good impression — making sure we “represent” and have a “presence” in the world. But what about those of us who are more about doing, than talking, and who are quietly brilliant, instead of gregariously pretty-good?

I get so sick and tired of being measured by my sociability, how well I can put people at ease, and how well I can communicate to people who just don’t know as much as I do, yet are in charge of me for some strange reason.

So, I’m building my case for people to get a grip and see just what I’m capable of doing. I’m going to put this all together and then turn it over to people who are considering hiring me, and have them review this material before they come anywhere near me. I really don’t want to waste my time on projects and companies that don’t know enough to realize how much I know, and aren’t able to respect me because of their ignorance. That’s how things are now — the people I work with have been doing things a certain way for years, and they think it’s fine, but obviously it’s not, because executive leadership is putting the pressure on. But rather than take stock and get a grip and approach things strategically and systematically, they continue to just throw stuff at a wall and see if it will stick.

Sigh.

Anyway, that’s not going to be my problem for much longer. I’m going to whip up a kick-ass portfolio that people can see and read and become familiar with — and that I’ll be able to tailor the way I want it to be. I have just been doing this way too long, to have to put up with this ignorance, and I need to give myself credit for what I’ve done.

And I realize that this is one of the issues that’s come up since software and web development got popular and everyone started doing this kind of work — there’s a huge glut of people who haven’t been doing it that long, who know all the catchwords and have certain skills in certain technologies, but they don’t have the breadth and depth of real-word experience — the kind of experience that can mean the difference between doing something right the first time… and spending untold amounts of time and energy and money fixing sh*t that’s broken, weeks and months and years on down the line.

So, you’ve got a whole lot of “talent” that’s of variable quality, and the ones who rise to the top are the ones who make the most noise and have the most glitz… not always the best quality.

And then there’s folks like me. Who just know how to do stuff and are so low-key about it, nobody things we’ve got anything going on. But we’re like the bass players in the band — we stand at the back, we do our part and don’t move around much, but we still lay down a mean line for everyone to follow, and without us, the song just wouldn’t sound the same.

I guess it’s always been that way. I just need to do what I can to make the most of what I do best… and I need to do that. I’ve built a site that can hold all the details of my work over the years, and now I need to build it out and really kick some ass showcasing what I’ve done.

Because I’ve done a lot. The more I dig into my past, the more I realize it. I’ve done some great stuff over the years, and I need to be recognized for that and also compensated appropriately.

So, it’s time for me to quit bitching about the general work situation and go do something — time for me to fill in the blanks about what I’ve done with myself and how and why… and let the world see what I’ve done, in ways that I can express myself best.

So I’m not particularly verbal. So I don’t test very well. So I have trouble “selling” myself when I talk to people.

So what? I can write, I can design, I can code. I’ll use them for my own purposes, and just get on with my life to the best of my abilities.

And there we have it.

TBI Recovery – Please speak my language

There are lots of ways to say things

I had an interesting appointment with my neuropsych on Friday. I had been feeling really bad all week, and we talked about it. I was trying to figure out the physiological/neurological causes of why I had such a bad reaction to what was going on — because I believe that our “wiring” sets the stage for our actions and reactions, and I was hoping to gain more insight from someone who has specialized in studying people’s wiring.

However, I was to be disappointed. My NP seems to take the approach that psychology can explain everything — and having the right psychological approach and practice, is the way to fix everything. Well, everything that was bothering me, anyway.

It’s fine that they think this way. I agree to some extent. Additionally, I have the perspective that our bodies and our neurology really set the stage for our state of mind, and our “neuroceptive” state can practically hijack our thinking, even before we’re aware of it.

My NP does not agree. They have their perspective, and they are very invested in that perspective. I’ve suggested a number of times that there might be something else underlying my intense reactions. But they keep telling me that I’m doing a head trip on myself and I’m buying into flawed information about myself (which I developed when I was very young) and that the way out of it is to identify those flawed messages and then replace them with something else.

Yah, okay. Whatever. I don’t want to be disrespectful (because I do see their point to some extent), but I really need something more advanced and evolved than that narrow approach. Everything important doesn’t happen from the neck up – a whole lot of information and intelligence is processed in the heart, as well as in the gut. The science tells us that, loud and clear, and I’m not sure why they’re not on board with this.

So, I’m going to have to find that sort of orientation somewhere else. Like in the Polyvagal Theory, which is much more in synch with what I feel and believe. And the other scientists who are working on heart-based intelligence and gut-based intelligence.There are more and more of these folks around, nowadays, and finding their writings is getting easier and easier.

It’s disappointing, that I’m working with someone who is so invested in their own way of thinking about things, that they won’t consider anything else. And it’s frustrating for me to hear them use all their lingo and psycho-speak to describe my situation. Because it’s only part of the story. Their part. Not my part, too.

Well, people are limited, and it’s unrealistic for me to expect them to have it all together in every single respect. They have helped me a lot — and in fact some of the times they’ve helped me the most, were when they were the farthest off track, and I had to come up with my own solutions.

What bothers me, is that I know I’m not the only one who struggles with this. And it bothers me that my own NP is missing out on a whole other dimension of TBI recovery that could help them as well. They have health issues, too, which I am convinced could be helped with a broader view of what constitutes “intelligence” in our bodies, not just our minds.

But they’re so locked into their own concepts and their own language, that they’re closed off to that possibility. And so I spend yet more time hoping that they’ll be able to offer me the kind of input they’re probably never going to offer.

My bad. Gotta fix that.

The thing I have to remember in my clinical/therapeutic working relationship with this individual is that they have their own language which has been shaped by their upbringing in an urban professional household. Their parents were psychologists/psychiatrists, so there’s no great surprise that they think the skull-based brain is the answer to everything. One of the issues around their upbringing (my own was half urban, half rural, and both sides of my family come from a long line of farmers) is that it taught them to talk and think along certain terms — I read some interesting research, a while back, about how rural societies prize introverted, homogenized, self-effacing ways of relating and behaving, while urban societies prize extroverted uniqueness that draws attention to itself. And I can definitely see the difference between my own way of relating and my NP’s way of relating – they probably have no idea how deeply I disagree with their point of view in some respects, because I have not been that forthcoming about my own unique perspective. I never really learned how to have those kinds of conversations, and frankly I don’t care to learn, because they don’t appeal to me that much. I’m definitely more rural-leaning in that respect.

On the other hand, my NP seems pretty oblivious to my differences of opinion, probably in part because I don’t shout it out loud… and they seem to believe that their way of thinking about things is, well, the right way to think about things. They seem to have an awful lot of skin in that philosophical game, when it comes to these topics we’ve been talking about — what makes people do what they do, what makes us tick, what makes us well and what makes us sick  – how’s that for today’s poem? ;) I can understand their point of view, but they don’t seem to understand mine. Or maybe because they’re the highly educated expert and I’m the TBI survivor, they consider my point of view fundamentally flawed and awaiting their remedy.

Whatever the root cause, whatever the reason, I think that my recovery has sometimes not been helped by their one-sided belief system. I need people to be able to entertain different possibilities, and explore alternative options and explanations. I need them to suspend judgment and disbelief, every now and then, not stay locked into a conceptual framework that is their comfort zone. I also need them to be willing to stretch a little bit — as I often do — to find a new and different way of approaching intractable problems that resist being solved. My life often feels like a friggin’ intractable problem that resists all attempts at solution; to approach it well, I need to get creative. And that can’t happen if only one person in the room is willing to color outside the conceptual lines.

Don’t get me wrong — I have experienced a pretty amazing transformation in the past several years, thanks in large part to my NP. But now that I’m past the most rudimentary understanding rebuilding of basic skills, I need to keep growing and learning, so my recovery can continue. That’s going to require more creative thinking, more inventive solutions. Conceptual brittleness is a problem — and I need to figure out how to work around it with my NP.

It’s a problem. What’s more, I also think that my difficulties with dealing with my NP’s biases, is not mine alone. I think there are a lot of people just like me, who don’t necessarily get the kind of care and consideration they should be getting, at both basic and complex levels — because of cultural and communication differences that experts and clinicians are not picking up. I think that one of the biggest barriers to TBI prevention and safety is lack of education. And lack of education happens because people aren’t speaking the same language. Doctors speak urban. TBI survivors speak rural. And doctors expect us to adapt to them, without them reaching out to us.

Now, I’ve been fortunate to have been raised in a family that was very focused on education. My parents both attended college, as did my aunts and uncles, cousins and siblings. It’s just what people did. Yeah, we’re all a bunch of farmers, but we’re edji-cated hayseeds, we are! ;) As a result, I have this rural orientation overlaid with an education-oriented vocabulary, and an eagerness to learn that has stood me in good stead. I’m comfortable reading long scientific terms, even if I have no idea on God’s good earth what they mean, the first time I read them.

But what about all the other folks out there who haven’t had the same advantages as my own background? What about all the TBI survivors who aren’t comfortable with the big words, who haven’t been educated about what TBI and concussion are all about, and who struggle with dealing with doctors who have a strongly urban point of view and conversational style? What about them?

Lost in the shuffle, that’s what. Left to their own devices, to figure things out.

It’s bad enough, when I’m going through this… and I have a lot of advantages on my side. But others? Oh, it’s tough out there. Very tough.

Still and all, it wouldn’t hurt if my NP would realize the extent to which they are biased about what makes TBI recovery possible. I can keep working with them, understanding their point of view and their apparent biases. And I can keep coming up with my own conclusions in the face of their one-sided approach. I’ve been doing that, and I can keep doing it.

But every once in a while, it might be nice, if they actually spoke my our language.

Getting the Point Across

Communication Issues
[x]  Trouble being understood – check
[x]  Trouble understanding – check
[x]  Trouble finding words – check
[x]  Trouble communicating in generalcheck

Yes, that’s been the story of my life for the past 2+ weeks. Seriously.

And now that the project has finished (mostly – there are still a few outstanding items to take care of), I can get back to my life as I once knew it. I can catch up on all the little tasks that I had to push to the side, and I can get back to my daily breathing, sitting, and exercise. I’ve missed it. I really need it.

More than anything, I just want to put the past three weeks behind me. It has been unbelievably hard on me, and now that I’m out of the woods with the workload, I’m starting to feel more of the effects. When I’m in the thick of things, I tend to be so focused on what’s in front of me, that I can’t even tell how hard I’m working, or how hard things are for me.

But these past three weeks have been killer. Especially due to my communication issues.

Not being able to understand what people were saying to me… Not feeling like others were understanding what I was saying… Getting ideas scrambled, not finding the right words, not being able to communicate effectively, period. I know that there were others on the project who were not making much of an attempt to try to understand, but that doesn’t change that feeling I had of being in a sort of bubble where the right words weren’t getting out and the right meanings weren’t getting in.

As I said, in the thick of things, I was just so focused on getting it all done, that I didn’t let myself dwell too much on this. If I had, I’m not sure how I would have gotten it all done. I had to block that out and just keep going. But looking back, it was such a blur, such a confusing, frustrating, confounding blur. And I miss my old ability to piece things together quickly and smoothly. I miss having the old feeling of being sure of what I was saying and hearing and understanding — even if I wasn’t always really “with it”, at least I had a sense of being there.

Now…? That sense is sorta kinda gone. Especially in times of intense stress. And although I don’t like to think about it, I can’t seem to escape this feeling that I’m walking around in a kind of a daze much of the time — doing my best to keep up as best I can, but often struggling to understand and feel like I’m being understood… even when I’m not fully aware of it.

This is one of the hardest things about TBI — the communication difficulties, the thinking difficulties, that leave me feeling like I’m usually missing at least a part of what’s going on. Maybe I’ve never been 100% aware of everything going on, but times like this it feels even worse.

It’s probably because I’m so damned tired. Exhausted, really. I feel a lot better, when I’m rested, but even then, I often feel as though a few of the jigsaw puzzle pieces have dropped off the table while I’m putting the puzzle together, and I won’t realize I’ve dropped them till I almost get the whole picture built, then realize there’s something missing.

Well, I suppose everyone has this. Maybe I’m lucky, because I realize it.

But tonight, I’m not feeling very lucky in that regard.

Just tired. Glad to be done with the project, but really, really tired.

What I was meaning to say, is…

Uh, oh...

I’ve found a new area I can use some help. Actually, I’ve had this issue for a while, I just have been so busy taking care of other things, that I haven’t paid a lot of attention to this. It’s being able to make myself understood under pressure. This matters more and more, as I get into situations that are more challenging than the everyday. Speaking at work with people and in meetings, speaking to groups of people. Speaking with people whom I really need to communicate with. I tend to get tongue-tied and stumble around a lot. Which doesn’t reflect well on me in a work situation — or make me look like I know what I’m talking about in general.

This was not that big of a problem with me before, because I didn’t really talk much before. I just kept quiet. I kept to myself. I didn’t volunteer information and I didn’t go out of my way to discuss things with people.

Now, however, I’m talking more with people, and I’m finding myself stumbling over myself at just the worst times. Sitting in a meeting with higher-ups. Talking with people who need me to handle something and handle it well. Interacting with people under tense circumstances — just the times when I need to be at my best, I can be at my worst.

It really sucks. But getting all bent out of shape about it is not going to change anything. If anything, it makes it worse.

This is something I really need to handle. I can’t keep on this way, I need to learn how to deal with this. I can think of a few things I can do:

  1. Plan what I say before I say it. – If I’m in a meeting, I can think through what I’m going to say before I say it. I can keep a pad of paper with me and jot down some ideas to organize my thoughts before I spek.
  2. Say less, not more. – I tend to try to pack everything into one rushed statement. This, I believe, is because I’ve not really developed my skill at back-and-forth conversations. So, I try to say everything at once. I don’t need to do that, actually. In fact, saying less tends to be better than saying more.
  3. Limit what I say and let that be enough. – This relates to saying less, but it’s a little different. Limiting what I say has to do with sticking to a single topic, not having to exhaustively cover every detail of a subject and letting it go, even if I haven’t expressed and discussed and covered every single topic I’ve thought of.
  4. Don’t fret about what other people think about me. – This is the hardest one. But it’s very important. If I start to fret about what other people may or may not think about me, it sets me up for more stress and more problems. More tongue-tied struggles. But if I can relax, it doesn’t need to get the best of me. When I fret, all of the above become much worse. Besides, what I think others think of me may not even be true.

It’s all a process, of course. And all of us have places where we can improve. It keeps us engaged. It keeps us honest. It also keeps us on our toes. Communication is key for so many things, so the better I am at this business of making myself understood, and not giving up to the anxiety and self-consciousness, the better.

The magic of Active Listening

At last, a light goes on

So, I went for my drive yesterday, after I got done with my Big Task of the Day. I stopped and got myself a snack, then headed out on the roads, just driving. The sun was out, and I had my music on, and the more I drove, the more awake and alert I felt. (I guess sitting at the computer for six hours straight kind of numbed me out.)  I took turns down roads I normally don’t have the time to explore, and I meandered around my town and the neighboring towns for some time. Eventually, I found myself driving up the side of a mountain to a hiking trail I had heard people talk about. It was getting late in the afternoon, and rain was threatening, but I decided to head up, anyway. Even if it rained, no biggie. I was probably going to get pretty sweaty from the climb, anyway. A little rain might be nice, actually.

So, I parked near the trailhead, outside the gates, which were supposed to be already closed, I grabbed my phone (just in case), and headed up the side of the mountain. I didn’t have the right shoes on — a pair of Tevas, which I suppose would be okay, but weren’t really suited for heavy hiking. But I went up, anyway. I figured, people have been climbing up sides of mountains a lot longer than state-of-the-art hiking shoes have been in existence. Besides, if things got too hairy, I could always climb back down.

Not where I was, but it looks like it

It turned out to be a pretty good hike. Took me about an hour to get up and back down. The trail was steep, but it had plenty of options for hikers of different abilities. I crossed paths with a number of people, either going up or coming down. Several pairs of women, looking like harried mothers who grabbed an hour for themselves to go for a hike and talk about their lives… an older couple, the woman looking tired and eager to get down, and her husband/partner looking like he was really enjoying the hike… an extended family of kids, parents, grandparents… and a lone guy with a military haircut who was running up and down the side of the mountain, boulders and rocks and roots and all.

It was a rigorous hike. Half-way up, I seriously considered turning back and heading to the car. But I could see the summit from where I was and, dammit, I was outside on the one sunny day we’d had in over a week, so I wasn’t going to waste the experience. So, I kept on. Got to the top. Looked to the west and the setting sun. Then headed back down — very, very carefully — and got off the mountain just as the first raindrops were coming down.

So, what does all this have to do with active listening? I’m talking about hiking, right? Well, kind of. See, one of the most remarkable parts about yesterday was that I was able to interact with people on the trail. I actually exchanged words with them, had little conversations with them. Like normal. Like I never had before I started working with my neuropsych. In years gone by, I would have averted my eyes and not said anything to the people I encountered. What’s more, in years gone by, I would have avoided going on a hike by myself, because I was too anxious about getting lost and not being able to ask for help. That hike yesterday, and how much it improved my mood and sense of well-being, was made possible by my new-found ability to communicate with people.

Silenced by my own choice

See, here’s the thing. I used to be completely, 100% convinced that I could not communicate with other people. Seriously. It was to the point where I (and others) considered myself a slight bit autistic. I just wouldn’t voluntarily talk to people at great length or in any depth. I would get lost in the conversations. I would forget what we were talking about. I would react strangely, and say things I didn’t mean to say. I just did not do a very good job of communicating, even though I did a pretty good imitation. What was really going on was I was pretending to talk to people, but the minute the conversations were over, I’d put them out of my mind or dismiss them.

Knowing what I know now about the effects of multiple TBIs on working memory and short-term memory and my susceptibility to distraction, I realize now that I simply was not fully engaged in conversations with people — for most of my life. When I was a kid, I had trouble hearing, and I didn’t feel comfortable asking for clarification, so I decided to interpret things the way I wanted to, not based on feedback from others. And I got in the habit of doing that. As I got older, and I had more head injuries, my working memory capacity apparently shrank, and I would literally forget what people had just said to me a few minutes before. And/or in the midst of the conversation, I would get distracted and lose the train of the conversation.

This still happens, in fact. It hasn’t improved, I’m sorry to say. However, now I have a way to deal with it. It’s called “Active Listening” and it’s when y0u are fully engaged in a conversation with someone, repeating what they say to you, and asking for clarification when you don’t understand something.  It’s not about covering up my cluelessness. It’s about getting clarification because I actually care about what people are saying to me, and I want to understand.

Active Listening really, truly is amazing. It’s changed my life. Even when I am struggling with terrible distractability (as I often do), and I’m susceptible to short-term interference, and I’m forgetting what someone just said a few minutes ago… when I engage with the person I’m talking to and I make sure I understand what they are saying — asking for clarification and repeating back what I think they said — I can actually “get” what’s going on. I can understand what people are saying to me. I can get it. I get it.

Which is totally amazing. As recently as five years ago, I was convinced that I was a lost cause, when it came to communication. I was off in my own private Idaho, off in my own little (and I mean little) world, telling myself that I was incapable of engaging in extended conversations.

But then my neuropsych got talking to me, and I started to interact with them. They gave me space to ask (what seemed like) really stupid questions — even say “I don’t understand,” and have it not be a federal offense. All my life, I never felt comfortable admitting that I didn’t understand what people were saying to me. But I remember so clearly, the first time I can ever recall admitting that I didn’t understand what was being said to me (by my neuropsych). And I remember how much of a relief it was, just to say it. Kind of like cycling stars admitting that they’ve been doping regularly for years. Something that was so taboo, just getting said. And once I did admit that, and I was able to get clarification, a light went on. And that light began to shine and shine and widen and widen and gradually came to illuminate my whole life in ways I never dreamed possible.

People WANT to be talked with

What I learned was that people would NOT think poorly of me, if I admitted I wasn’t following what they were saying. What matters is that I’m attempting to understand. Apparently, a lot of people don’t make the effort. But I do. Absolutely, I do, now that I realize that I can. It’s not that I can’t understand. It’s that my brain has been rewired to “drop” things far more quickly than I’d like (or often think it will), and I’m prone to getting distracted in the middle of a conversation, so small wonder that I get lost at times. It’s not that I’m deficient or stupid. It’s that I’m distractable, and I don’t factor in my working memory capacity (or lack thereof) when I’m talking to people.

When I do factor in those aspects of my existence, however, I am free of them. Because I can manage to them. I can be aware of them, and I can deal with them. And when I sense I’m not getting something that someone is saying to me, I can always pause the flow of the discussion and get clarification.

As a matter of fact, I’ve discovered that a lot of people actually love it when I stop the flow to ask for clarification. People like to talk. They like to be heard. They like to know they’re being heard. So, no, they don’t mind stopping to explain. They rather enjoy it, in fact.

When I let that happen – get out of my own way and forget about looking “stupid” to people because I need clarification – good things happen. A lot. Things like going out for drives and hikes in the woods, because I know that whatever happens, I’ll be able to ask for help (directions, instructions, tips, whatever) if I need it. Things like passing conversations exchanged (like a normally social person) on a trail in the woods on a beautiful day.

And when I interact with other people, I can develop myself further. Because I need to. I think it’s true of everyone, but I’m working my way back from a serious developmental deficit that arose in large part from my perceived inability to communicate with others.  I haven’t just been a “quiet” person all my life. I’ve been a deliberately silent person. Because I would get lost during conversations. And I couldn’t take the chance of anyone finding out. And I couldn’t figure out how to get un-lost. Not on my own.

So many years spent in fearful silence, terrified that someone would find out that I didn’t understand what was going on… that I would find out that I didn’t understand what was going on, because I didn’t realize I’d gotten off track, about 10 minutes ago, and I didn’t have a clear idea about what was really being discussed.

Those days are done. I know what to do now. I can go for a drive. I can go for a hike. I can live my life.

Like never before.

It helps if you talk to people

Well, I’ve had a very eventful 24 hours or so. Last night I stayed up later than I should have, and I decided to take a long, hot shower before I went to bed. Odd thing was, the water wouldn’t get very warm, and needless to say, the shower was neither long, nor hot. At the same time, I heard my spouse calling that the heat wouldn’t turn on. Last night was a chilly one, and just when we thought we were in the clear, sure enough, we needed to turn the heat on a little.

Not to be. Turns out, we ran out of oil. Bummer. The tank was empty. M-T. And when I called the heating oil folks (they have a 24-hour line), they kinda bitched me out for not paying in full on time. They said they’d send someone over, but not till morning.

It’s true. I have done a piss-poor job of keeping on top of paying the people who help me heat my house. Mostly because I’ve been very low on funds all winter, and I haven’t had enough money on hand at any one time make a decent payment. Until recently. My employer paid out our bonuses a month late, so we were waiting around for that…

Anyway, the real issue was not just the late payments. The real issue was that I hadn’t communicated with them about my situation. I had a little talk with the service guy this morning about it – he said that plenty of folks are in my same situation, and that the oil company can work with me, if need be. But I do need to communicate with them.

This is an area where I am really working hard, these days, and I’ve come an amazingly long way, in the past three years. Time was, I really didn’t discuss anything with anyone. Not my friends, not my family, not my co-workers. I just kept my head down and worked. Or pretended I knew what people were talking about and faked my way through everything. And when in doubt, I did nothing. I never asked anyone for clarification, I never engaged anyone in back-and-forth communication. I either just acted like I knew what was going on, or I pretended nothing was going on at all.

Why? Because I felt stupid. Because  I felt dense and inept and I had a hard time following conversations. It’s tough to keep a conversation going, when your short-term working memory is for shit, and you never stop in mid-dialogue to make sure you know what the hell is going on.

But I never stopped to ask for clarification, and I never let on that I was confused or had gotten turned around. It was just too much for my pride to take. And all the while that I was acting like I had it together, I was struggling and beating myself up for not knowing what was going on.

This is changing. Big-time. I can even remember the first time I asked anyone to clarify what they were saying to me. It was my neuropsych — about 2 years ago. And the first time I ever stopped someone to ask them to clarify what they were saying, it was terrifying for me. A milestone. Because my neuropsych didn’t call me an idiot or treat me like I was stupid. They just clarified, and the conversation moved on.

It’s pretty amazing how that works. And it’s pretty amazing that I even took that first step. Admit that I didn’t know what was going on? Not me! Ask for help in understanding what someone was saying to me? Never! But that day, things changed.

Now they have to change again. I need to start talking to people and ask them for help when I’m in a jam. I realize that I just didn’t trust myself to discuss my situation. I kept waiting for it to change, hoping it would change. But time got away from me. And I realize that what I really need to do is trust others to be willing to work with me — and not expect that they’re going to rip me a new one, if I fall short.

I wrote a check for the oil and gave it to the service guy. Then, later, I called the oil company and told them I’d done it. They were so nice to me…

Funny, that.