Well, why didn’t they just SAY so?

People need to explain things so others can understand

When I was a little kid, I had trouble hearing. I could pick up a full range of volume just fine, according to the tests they gave me, but I had a hard time distinguishing between sounds.

“S” sounded like “F” and the soft “TH” to me.

“B” sounded like “V” to me.

Unless I saw a word written out, it was sometimes hard for me to understand precisely what was meant. Based on what I heard, it could have meant anything, really.

I was also a very literal child, who didn’t “get” the whole slang thing. That 1970s song “Convoy”, which was an extended conversation between truckers using their trucking slang, was pretty interesting for me to listen to. I had all sorts of unusual ideas about what exactly was going on there, and when my mother asked me if I knew what the song was about, I said, “Sure! It’s about truckers going bear hunting!”

She gave me a strange look that made me think I was probably wrong — and sure enough, the “hunting bear” reference was really about truckers doing battle with the highway patrol.

I also had a lot of disagreements about what people were talking about and what they were saying to me. I got my letters mixed up, because they all sounded the same to me, and I made up my own (stubborn) mind about what words should be used — and how.

I remember one time I had a pitched battle with my mother, who told me that the name of one of my school friends was “Valerie” — with a “V”.  I heard “Balerie” — with a “B”. Never in my life had I heard her name pronounced with a “V” sound, so being the stubborn kid I was, I argued for quite some time and got very, very angry, that my mother had it wrong.

She kept repeating “Valerie… Valerie… Valerie”, drawing a “V” in the air with her finger, and I got angrier and angrier.

Because that wasn’t what I experienced. It wasn’t what I heard.

I also had trouble pronouncing words. I had a “lisp” when I was little, partly because I didn’t realize you had to form “F”, “TH” (the soft one), and “S” differently with your mouth. I thought they were all the same sound, so I picked the one that was the easiest for me to tolerate.

Part of the issue was that I had trouble with my ears — they were so hyper-acute, the sound of an “S” literally hurt them. It was painful to pronounce “S”, so I tried to soften it, like a “TH”. And of course, that was wrong, so I was in speech therapy for some time, to try to correct it.

That was rough. They took me out of my regular classes, and not only was everyone staring at me, but then they walked me through the halls of the massive school that seemed so cavernous and vast to me. I could never remember how to get there, and I got lost a number of times. People got upset with me, because apparently it was easy to get to the speech therapist’s office. Easy for everyone else. I got turned around and couldn’t find my way. And the speech therapist had to keep coming to my classroom to show me the way.

So, I figured I must be an idiot.  Such a simple thing … and it was so hard for me. There must have been something really wrong with me.

I also couldn’t makethe sounds right. The speech therapist kept trying to get me to sound out the sounds, but I couldn’t do it. I couldn’t tell that there was a difference between them, and try as I might, I couldn’t make the connection between what they were telling me to say, and what I could/did say. It all sounded the same to me, and nobody explained to me the way to shape the sounds in my mouth, so I could say them correctly.

After some time trying to work with me, the speech therapist gave up. They may have suspected I just wasn’t trying. Or they couldn’t justify spending any more time with me, because I wasn’t making any progress. They may have also believed I was deliberately being difficult.

There were a lot of things that were pretty challenging for me, which I “should” have been able to do. But I couldn’t. And nobody seemed to know how to help me.

What really would have helped, is if someone had just told me that you shape words different ways with your mouth. Everybody seemed to take for granted, that everyone knows that. But looking at someone’s mouth from a distance, you cannot see the position of their tongue or their teeth or even the subtle differences in their lips. “B” looked pretty much like “V” to me. And even though “TH”, “S”, and “F” look different from a distance, I could not tell the difference in the sounds, so I could never tell if I was saying it correctly.

So, I went with the sound that was the least painful — the “TH”.

Eventually, it dawned on me that sounds were shaped differently, and if I just formed them properly, even if it didn’t sound right to me, others would get it. I have no idea if I reached this conclusion myself, or if it finally sank in, after I was on my own and the lessons of the speech therapist finally sank in with me. I used to think I figured it out by myself, but now I think it could have been a delayed realization.

In retrospect, it would have been really helpful, if someone had just sat me down and explained to me slowly and carefully, in very clear and logical terms, that words and sounds were produced with certain positions of lips, tongue, and teeth. And have me practice making those sounds with my mouth. Even if I couldn’t hear the sounds properly, I could know that I was forming the words correctly, so others would understand me. Even if I didn’t get it, at least someone would. And 1 out of 2 is better than 0 for 2.

Then again, they may have tried. But I was a tough case. I had trouble paying attention. If people didn’t explain to me why we were doing something, I lost interest. I was also overwhelmed and stressed from the walk to the speech therapist’s office, so that made it hard to concentrate. Plus, I didn’t know why I wasn’t getting it. I just didn’t know. And neither did they, apparently.

The whole speech and articulation thing just messed with my head when I was little — to the point that I started hyper-articulating things, and I became pretty OCD about making sure I was pronouncing words exactly right. It’s one of the reasons I can pronounce foreign words pretty well and also simulate a non-English accent pretty well. I get extremely nervous if I don’t pronounce something right. It’s a visceral reaction to past bad experiences, I guess.

As a kid, I had so many failed interactions, thanks to my speech and comprehension difficulties. On my first day at kindergarten, I couldn’t articulate to the teachers what my address was, so they couldn’t put me on the right bus. And after my first day of school, ever, when my mother was waiting at the bus stop, her firstborn was nowhere to be found. The school called to tell her they were giving me a ride home, but my mother almost lost it when I didn’t get off the bus.

I had lots of trouble with kids at school, too. I tried to talk, but I couldn’t seem to make myself understood. I felt like I was babbling into the wind, and it might have sounded that way to them, too.

Ultimately, when I could read books, I turned to them for company. That was enough. It was more than enough for me. Books didn’t make fun of me, they didn’t look at me strangely, they didn’t correct me, they didn’t test me to see if I got it. They were just there, waiting to impart their knowledge. Of course they never told me how to pronounce the big words that I found there (I thought rendezvous was pronounced renn-dezz-vus, until my dad told me otherwise), but then, that never mattered, because I had the meaning in my head.

I swear, I really don’t know what is up with people who can’t be direct and just come right out and tell people what the deal is. Hinting around and intimating makes me nuts.  It drove me nuts as a kid, and it still does today.

If I’m messing up, just tell me. I’ve done it before, and I’ll do it again. And it’s a heck of a lot easier to deal with, when you have direct information, rather than trying to “go easy” on me. Easy is hard. Direct is simpler.

Don’t make me guess — just tell me what the deal is.

And then I’ll deal.

Doctors: They’re just so far away from us

It’s hard for me to know what to say to doctors, and how to say it

In preparation for seeing a new neurologist in the beginning of next year, I’ve been listening to some physician podcasts, lately. It’s my latest “thing” I do when I have some free time to listen. I need to better understand doctors and how they think and talk, so that I’ll be better able to communicate with them, if I end up seeing them.

The podcasts are usually pretty short and I can get at least 20 minutes in, during lunch or while I’m doing busy work at the office.

I don’t really have that much time to listen to podcasts or watch videos, in general, because it seems to take me longer to “get” what’s going on, than I expect. And it’s a little discouraging to listen and expect myself to understand immediately, but have to either back up and listen again, or just let it go.

I think it’s harder when I can’t see someone talking. Watching videos, it is easier for me to get things. But again, it takes up a lot of time, and it’s a bit discouraging to feel like I’m falling behind.

Anyway, today is my last full day of work before my Christmas and New Year’s vacation. I’ve got a few things planned for next week… but not much. Most of what I’m doing is taking care of myself with my support group — seeing different folks who can help me in one way or another — and resting. And doing some work on the projects I have going. This is going to be a good time to get away from my routine that has me on-the-go all the time, and do some deeper thinking than usual.

Should be good.

One thing I’m going to be working on, is collecting my info for this new neurologist I’ll be seeing. I’ve been intending to see a neuro for about a year, now, and finally it looks like I’m going to connect with one. I have high hopes about this… but I don’t want to get myself too caught up in hopes. I’ve had things go wrong before, so I have to factor that possibility in.

Anyway, it will be good for me to just collect all this info, anyway, so I have it to talk to any and all of my doctors later on. I haven’t really discussed my headaches in-depth with my PCP — they told me to go see a neurologist, anyway.  It will be good for me to collect my info in one place… also for myself.

I tend to just disregard what’s going on with me, because there is so much going on, on a given day. And I’m kind of resigned to it all — the vertigo, dizziness, feeling sick to my stomach, always having a headache, the ringing in my ears, the noise and light sensitivity, the joint and muscle pain… it’s all one continuous “cloud” of background noise for me, and I just live my life in spite of it. I don’t let it stop me. It slows me down at times, but it doesn’t stop me. And I use it as a barometer to make sure I’m not overdoing it. More pain, more noise… that means I’m overdoing it and I need to rest. So, it can come in handy.

But some days, it just feels like too much, and I’m not all that sad about the idea of not living forever. “Eternal rest” sounds pretty friggin’ good to me, some days. Not that I want to kill myself (I haven’t felt that way in a few years, which is a positive development). But I don’t mind the idea of this whole “deal” not going on forever.

Other days, I manage to deal with it… and I have hopes for things changing for the better.

If only I felt like I could effectively discuss this all with a doctor. I really don’t.

Talking to doctors has never been my strong suit. Conveying the right information in the right manner has always been a challenge for me — I either gave them too much information, or not enough. Either way, I often end up looking a bit dense and malingering, like there’s not really anything wrong, so what the hell am I taking up their time for? Listening to the physician podcasts, I’m struck by how specialized their language is, and how differently they describe and conceptualize things. They have their own language, and with their own language, comes a different way of thinking about things — very, very different from how the rest of us think and deal with things.

Going to the doctor is like going to a different planet, sometimes. It’s a foreign place that often doesn’t seem to have anything to do with my everyday life. Doctors are often so removed from the flow of regular everyday life, with their entire systems being reshaped by medical school, their thought processes shaped by specialized terminologies and ways of looking at situations, and their social status being separate and apart from “the sick”.

They deal with extreme cases all the time, so of course they have to protect themselves. They’re human, just like us, and the medical school system seems to crank out professionals who are doctors first, and humans second. And if they never have any physical problems of their own… well, how can they really truly understand the situations of the people they’re working with?

It’s very odd. And it’s also perfectly understandable.

But even though I understand it, it still bothers me. Yes, I get how the stresses and strains and secondary trauma of medical training produces individuals who are pretty far removed from their patients, in terms of thought process, language, and deep understanding of the human condition, but it’s still pretty depressing. And I get very anxious when I think about trying to explain myself to the next neuro I see — if that ever materializes at all.

Who knows if it will? But whatever happens, I still need to track my symptoms and keep decent notes, so that if it ever happens, I’ll have something useful to convey.

Well, anyway, gotta get to work. The day is waiting.

Onward.

 

 

Picking my battles carefully

Save your energy…

So, this week has been interesting. I’ve been working very long hours (12-14 hours a day), trying to clean up a lot of outstanding tasks that are months late. In the past, it made me crazy to be late on anything, or to fall short on anything I undertook. It just wasn’t allowed – and it worked out in favor of my standard of living, because nobody loves an overachiever more than a company that knows how to put that OCD impulse to good use to make a lot of money.

I’ve done well by my employers, if I say so myself. And before my TBI in 2004, I’d long been in the habit of never tolerating anything less than my best effort. I was always locked on target to continuously out-do myself, no matter what. But then I fell down those damned stairs, and things started to unravel. So much fell apart — slowly and quickly — and before long, I was just happy to be getting through the day.

One of the toughest things about my TBI after-effects, is having to deal with sudden onslaughts of all sorts of mediocrity. I was in a meeting the other day, discussing a project that I was doing a very poor job of managing. The whole thing had just gone off the rails, and I was a little freaked out about the whole thing. In this meeting, we were trying to come up with solutions about how to handle things, and I was getting very turned around and confused, not connecting the dots, and generally not representing very well.

It was pretty disconcerting for me. I’ve long been accustomed to being one of the “with it” people in the room, but that day, I was definitely not. So, I stepped back and just let the other folks who were with it talk amongst themselves and come up with a better solution.

And it worked out okay. We finished the meeting on an up note, and I got some new ideas about how to fine-tune the way I work with other people.

It just wasn’t a very good feeling, to sit there all foggy and clueless, not following the conversation and not being much help at all.

I hate this kind of chaos. I feel stupid and dense and impaired. Right now I’m feeling pretty impaired, actually, because I am tired, I am stressed, and I need to start working on some of my take-home tasks in a little bit. I need to hammer out some work before the weekend is over — and my spouse is inviting company over tonight, to stay into tomorrow, which takes a bunch of productive hours away from me in the morning. Shit. Oh, well. Welcome to my chaotic life — that’s just how it’s been, lately.

Actually, now that I think about it, the chaos has been ongoing since before the holidays — since before Thanksgiving time, when the holiday scheduling difficulties started to happen. So, since around the middle of November, things have been up in the air, and I’ve just been treading water, trying to get things done, to precious little avail. Three full months of uncertainty and scheduling problems, holidays and travel and jet lag and exhaustion… and more.

It’s just sucked so terribly, it’s unreal.

It’s almost as if the people who are in charge of setting the stage just don’t give a damn about whether or not anything gets done. It’s all on us to “manage” — and if we can’t keep up and can’t meet our goals and get everything done that we need to get done, well, it’s on us. Nobody seems to care anymore if things are actually done.  Nobody actually seems to care if things are left half-baked and fraught with uncertainty. It’s almost as though nobody cares about actual quality, as long as the “experience” people are having is acceptable.

Maybe I’m old-fashioned, but it seems to me that something should actually get done, every now and then.

I feel a rant coming on, but I’m going to step away from that, because it’s not worth it.

And here’s the crux of it all — I’ve been picking and choosing my battles, figuring out what matters most to me, and focusing on that, and letting the rest of it go. Some things I just can’t afford to get worked up over — things like sitting in a meeting and not feeling like I’m actually following everything that’s going on… or falling short on one project after another, and yet deciding to not get crazed about trying to keep up…

It’s best I concentrate on focusing on the good that I do have, and leaving the rest of it alone.

My time is much better spent on figuring out what I want to do with myself, and how good I want my life to be, instead of bitching about how bad things are right now.

It’s funny — I’m reaching a slightly different perception of my employer, these days. They keep taking things surveys at work asking about how people feel about working there, and every year the scores come back lower and lower. It’s kind of sad, that there are so many miserable people working there. At the same time, though, I think it has a lot to do with the character of the people working there. The fact of the matter is, we are responsible for what we make of things. All of us at work can make our situations into anything we want or need. We’re not helpless victims, and we have the power to control our attitudes and our gratitude.

And it occurs to me that maybe the problem isn’t so much that I’m working at a terrible place. Maybe the problem is that I work with a bunch of whiners. Thousands of them, in fact. They do a lot of bitching and complaining about just about everything under the sun. And I get really tired of hearing them bitch and complain about every little thing. It’s really up to us, to make things right — not to expect someone else to come along and fix it all for us.

At some point, you’ve gotta start acting like an adult.

I mean, geez, if people knew half the crap I have to wade through, just to get through the day, they’d probably run screaming from the building. But when you have to deal with it, you have to deal with it. The pain, the confusion, the fatigue, the emotional roller-coaster, the constant ringing in my ears, the unpredictable coordination, and this brain that just loves to crap out on me at just the wrong times… it’s just how things are, and I have to deal with it.

So, I’ve got a lot on my plate. And I have to pick and choose the battles I fight. The fact of the matter is, I am working with less working memory capacity and some pretty significant attentional issues, so if I get all worked up over things and I spend all my energy fighting against stuff that’s not going to change from me getting bent out of shape… then I just hurt myself. And I don’t want to do that. Getting a handle on what I can change, and focusing on fixing that, rather than spending a lot of time and energy beating myself up over things that are already done and can’t be undone, is a much better use of my time and energy. And it pays off in very big ways.

This weekend, I’m battling a bunch of backlogged work that I need to sort through. I’ve got so much to do, it’s crazy — and it’s all sorts of work, both tactical and strategic. So, no, I can’t worry about sitting in that meeting, earlier this week, and losing my place, not following what was going on, and getting turned around. Screw that. I don’t have the time. I’ve got to put my focus on other areas where I can be sharp, and I can be reasonably sure that I will make progress. Fine points like doing math on the fly and seeing quickly how a bunch of different moving pieces are put together… those are definitely not my strong suit when I’m stressed and exhausted (which was all last week — no, the past three months, actually). I just can’t let that derail me — I need to find where I can make up for those gaps, and concentrate on that — like just plain getting things done in the quiet and comfort of my own home. Like looking at bigger picture pieces of the grand puzzle.  And keeping my motivation high and intact.

So I’ll be taking a lot of time this weekend to just settle in and do the work that’s in front of me. It’s not terrible work — I actually enjoy it. There’s just a lot of it, and it’s really disheartening to be so far behind… and have people at work complaining about it, too.

So, off I go. Got lots to do, and I’m feeling pretty good about the idea of having it all done.

Onward.

Each year better than the last – I hope

Looking back… looking ahead

Now that Christmas and Hanukkah and Winter Solstice have all passed, it’s time to start looking ahead to the New Year. Kwanzaa is still underway till January 1, and the Seven Principles that mark this time give me good food for thought, even though I don’t actually celebrate it formally. Yuletide is also underway till January 1 (or the 13th, depending what part of the world you live in), allowing everything to just slow down for time to reflect and look ahead to the new year.

I’m celebrating the spirit of Yuletide more than any other holiday this season. It’s been a quiet time, without a lot of travel, and minimal racing around to take care of presents and what-not. If anything, I’ve been pretty neglectful of others, this holiday season. But you know what? They’ve been totally neglectful of me, too, so we’re even. If anything, the past years have been about me and my spouse doing a hell of a lot more for them than they did for us — doing more travel, making more of an effort, going out of our way to keep everyone aligned and on track with coordinating our holiday activities. This year, we haven’t done all that — and guess what… nobody picked up the slack. So there you go — they must not care that much, so… what-ever.

It’s time to us to take care of ourselves for once.

And we’ve done just that. I’ve been in a pretty low-key frame of mind since before Christmas — all the excitement of work notwithstanding — so, it’s been a very “Yule-like” time. Things have slowed down. I’ve allowed them to slow down. I’ve taken time OFF from all the sense of obligation and duty and required activities, to just rest and relax and not race around like a chicken with my head cut off, as I did in prior years. I’ve done energizing things that are good for me, and I’ve been eating lots of new foods that support me and my brain, as well. I’ve cooked up some pretty excellent dishes lately, if I say so myself, and my spouse says I’m becoming quite the chef 🙂

Looking back on the past year, it’s odd — I can remember bits and pieces of it, but I don’t get an overall sense of how the year was. I know it’s been challenging, and I’ve been actively looking for a new job for much of that time — especially in the past three months. At home, things have stabilized somewhat — with less undercurrents of stress and strain, but some extreme meltdowns that have taken a toll on my marriage. I’ve been through a lot of intense challenges with my spouse, including issues with money and infidelity and physically unhealthy choices. All in all, though, I think we’re on the up-swing, and taking time out from all the travel to see family, as well as me getting my own “house” in order, has benefited us a great deal.

I feel stronger and more stable than I have in a long time. Perhaps ever. And yet, there’s a constant sense of confusion and disorientation that is always in the background. I am more functional than I can remember being in a good long while, and the circumstances of my life are leveling out and becoming more “structurally sound”, but at the same time, I’m in a fair amount of general pain much of the time, I have tremors and shakes, and my brain is definitely not firing on all pistons. I feel like I’m maybe at 65% on a regular basis. 85% if I’m lucky.

And that makes me sad.

But I think perhaps I am acclimating to the instability. I’ve decided I’m going to just get on with my life, even though I can’t seem to get rid of the memory problems, the sleep difficulties, the constant sense of fatigue, confusion, distractability, getting things turned around, and getting lost and not knowing where I am for a few minutes at a time… and more.

My solution is to just keep going and not get sidetracked and depressed by what’s going on inside my head. If I can just keep going, keep working at things, and do my best to learn from my lessons and try again, this all doesn’t need to hold me back permanently. It might slow me down, but it’s not going to stop me.

I’m also coming to terms with the idea of not being Alpha in every situation at work — and beyond. At work, I have been long accustomed to being Alpha and being in a leadership position of some kind. But now that things are shifting and changing at work, I’m not sure if this is going to last. There are so many people at work who are a hell of a lot more possessed by the demons of blind ambition and greed, and I just can’t see competing with them around the clock. There’s all sorts of politicking — and if it takes politicking to get ahead, then I’m going to step back and not engage with that, and allow myself to simply be happy in the position where I am.

Now, I don’t for a minute expect that I’ll stay in that subordinate position for long, if I get the attention of the right people who recognize what I’ve got to offer. I do want to get ahead. I need a raise. I need a promotion. I need to really put what I know and have learned into action. But I need to be smart about it and not just charge forward into the gap, without understanding what’s ahead of me. If a promotion means I’m going to have to travel all over the world and not be home more than two weeks out of every month, then I’ll pass. There is that possibility. But who can say? Who can say…

Anyway, I can’t invest too much time and effort in thinking about what may be… inventing all sorts of dramatic stories about what that will mean for me. Who knows what will happen? I need to conserve my energy, because I continue to have some limiting difficulties — the headaches and the joint pain which suck a lot of energy from me… the confusion and disorientation that keep me guessing and demand even more energy from me to keep up and do my part… the vertigo and tinnitus that are just so damned distracting… and the attentional and distraction issues that interrupt what I’m doing with a regular dose of screw-ups.

I need to keep going, and in order to do that, I need to take good care of myself and also practice things that will keep me sharp and make me sharper, while not using up a lot of time.

• Ride the exercise bike or move and stretch, first thing in the morning to get my blood pumping and clear out some of the sludge that’s built up. (10 minutes a day)
• Practicing juggling one thing at a time, tossing it into the air, and then catching it.  I do this with my toothbrush each morning, to improve my eye-hand coordination and also my focus and attention. (1-2 minutes a day)
• Working on my balance and leg mobility with exercises on a daily basis. (5 minutes a day)
• Doing my measured breathing that regulates my heart rate and keeps me calm. (5-10 minutes a day)
• Allowing myself to really, truly relax on a regular basis — just letting myself collapse into bed or on the couch, and letting the fatigue just wash over me. (The first few minutes when I go to bed)
• Increase my dopamine levels by eating more foods with L-Tyrosine and also taking the supplement… and also taking Oil of Oregano, to keep my body from breaking down the dopamine and seratonin in my system. (In the regular course of my day.)
• Drinking plenty of water to flush out the sludge.
• Studying anatomy and physiology, to help me better understand the inner workings of my physical life — and how to improve my health.

All these things are really good for me — and I can work them into my daily routine. The biggest challenge is figuring out how to do them as a regular part of my life, without up-ending my routine. That is totally do-able, because I can find time when my breakfast is cooking, and I’d just be sitting around anyway.  I just need to do it. And I need to not just take things for granted, because I’ve been doing them a while and it feels like I don’t need to do them anymore.

That’s probably the biggest threat to my well-being in the new year — getting complacent and just assuming that “I’m good” and I don’t need to keep up my routines and activities. That state of “good” can rapidly decline, as I’ve learned time and time again.

So, as I look forward to the new year, I’m thinking about the basics. Focusing on that, and not making myself crazy with a whole lot of dramatic schemes and Big Plans, like I have in the past. I’m settling in, in a way, and it feels pretty good. I just can’t get complacent. Gotta keep working at it. Each day.

Well, speaking of working at things, I need to get a move on and get my ass in gear. I have some errands I need to run before everything closes for the day.

Onward.

Why complain?

I’ve been thinking a lot about my work with my neuropsych, lately. My work has gotten past the basic survival stuff, where I’m just getting my head around what is going on with me. I’ve gotten to the point where I’m looking beyond my immediate issues and focusing on the big picture, to where I can make a difference in my own life — and possibly the lives of others.

I’ve always had a deep need to make difference beyond my own individual life, and so often my issues have gotten in my way.  Susceptibility to distraction and short-term interference… the anxiety that would come up and completely turn me around. And of course the anxiety is fed by the cumulative effects of that “TBI Cascade”:

It doesn’t always happen like this, but the fact that it has happened in the past, makes me susceptible to anxiety about it happening again.

I think that’s the biggest thing hanging over my head – it happened before. Is it going to happen again? The fatigue, the confusion, the agitation, the busy-ness, the frustration, the pain, the distractability, the failure to understand, the failure to be understood. Anxiety over all this actually makes things worse, and it can be a real killer.

One of the ways that my neuropsych has helped me immensely is by helping me think through how to handle these things. The main thing they’ve accomplished is convincing me that I can handle these things. That I do have the resources and the capability to deal effectively with these problems. Before (as in, just about all my life), I would let them get the better of me, and I would get so turned around and upset by what happened — and the prospect of it happening again — that I would be completely thrown off track. Not good. Not good at all.

It didn’t help matters at all that people around me all treated me like the things that I had done and said in the past defined me in the present and also determined my future. What a load of crap. I see that now, but when I was 10 years old, being browbeaten by my father for being “stupid” and screwing up all over again, I couldn’t see that. The adults in my life couldn’t see it, and I certainly couldn’t, at that age. I mean, part of me knew they were all wrong about me, and I wasn’t stupid and retarded and mentally ill, the way they said I was. And I constructed a private world inside me (not unlike Marwencol) where I could be safe and act out in my own mind the kinds of scenarios where I was safe and secure and could be fully functional.

I had a very lively imaginary life, when I was younger. It was the one place where I could be safe and normal, and nobody gave a crap about the things I messed up. Nobody ever gave up on me in my imaginary place, they always gave me the benefit of the doubt, and I was always treated with respect and high regard by the imaginary personalities I invented  and interacted with behind closed doors.

Even up till the time when I started my neuropsych rehab, I was engaged with this imaginary world. I would have some great conversations with people in the car, driving to and from work. Some people talk to themselves. And I guess I was, except that my conversations were always directed towards another person who I imagined was there. That person would always be attentive and respectful and treat me like an intelligent individual. I didn’t have to constantly prove myself to them. Maybe I was talking to my “better angels”. But at least I was interacting. Some people don’t even bother to pretend. They just shut themselves off and don’t even try. Or they find solace in playing roles in the outside world that someone else invents for them. They aren’t really there and the roles aren’t really them, but they find solace in them, and they are able to function in the world as a result.

It’s like I was role-playing for life.

But anyway, back to complaining… I have to say, after working with a neuropsych for the past three years, I have found my physical issues to be much more manageable. Fatigue can be managed by just being realistic and mindful about my energy levels. And the pain has been greatly alleviated by reducing stressors in my life (not to mention exercising more and seeing a network chiropractor regularly for several years). So many of my really BIG physical issues — tinnitus, pain, balance problems, sensory sensitivities — arise from fatigue… when I manage my fatigue with common sense and responsible choices, many of them let up. And so many of my cognitive issues arise from the physical issues that arise from fatigue, so having a way of dealing with the fatigue and sleep problems and energy levels, that I get to solve a bunch of different problems by handling that core issue.

So, where does complaining come in? Well, basically, it comes into play when I am feeling hugely sorry for myself, and I am thinking that I can’t do anything about what’s going on with me. I tend to complain when I am over-tired and in this mindset that I am “stuck” with whatever bad situation is in front of me. Instead of doing something about it, I belly-ache and whine and moan about this, that, and the other thing.  And nothing gets done. Nothing changes.

Which is completely contrary to the truth of what is possible. The truth of the matter is that I do have the ability to change things. I can make different choices in my life that lead to different outcomes. I needn’t stay stuck in how things are, when they don’t serve me and my goals. Of course, in order to see that things don’t serve me, I need to know what goals I have, what I intend to accomplish, and how to bring that into being.

It’s all management issues. And when I get overwhelmed and tired and forget what I’m about, it can be all too easy to fall back into complaining-mode.

But why complain? Really? I have more power than I realize, to effect the kinds of changes I want to see in my life. We all do. The problem is when I/we get too fuzzy and foggy and overwhelmed with minutiae to develop a clear idea of what those changes can/should be.

That’s where long weekends like this come into play — an extra day to rest and rethink my life. I do a lot of rethinking on a regular basis. I have to back out of the busy-ness of the day-to-day and remind myself of what I want to do with my life, as a whole. It’s not just about what I want to accomplish at work, not just what chores I need to get done, what tasks I want to check off my to-do list. It’s about something much larger and more important, more lasting, more enduring, and ultimately more impactful, than just taking care of stuff that needs to be done.

Why complain, when I can create something far better?

Why indeed?

It’s not about living less. It’s about living “what else?”

Three ways to choose from

In the course of my life, I’ve run up against a whole variety of “interesting” complications that apparently came from my multiple Mild Traumatic Brain Injuries/concussions. And there have been times when I have been intensely tempted to just give up. Throw in the towel. Declare defeat. Get used to the idea that I’m disabled. Get used to the idea that there are lots of things I just can’t do anymore — like get enough sleep at night, understand conversations, control my temper, interact with friends and loved ones without pain and discomfort.

I figured, I’d have to adjust to it all, just like I adjusted to the tinnitus that used to drive me crazy when I was in high school. I used to sit in my room, crouched down in a fetal position, and hold my hands over my ears, praying that the ringing would stop. I would hit my head with my hands, shake my head, try holding my breath — try anything — to make it stop. It was driving me nuts, and there was nothing I could do about it.

I remember the day when I just quit trying to fix it. I quit trying to make it stop. I had been on the edge over that crap for weeks on end, and I wasn’t sure how I was going to make it through. Then I decided that if this was how it was going to be, it was how it was going to be, and I quit making myself nuts, trying to change it. I just accepted it. I wasn’t happy about it, but I just accepted it as something that was going to be part of my life.

I knew it wasn’t going to be there ALL the time, however — the constant ringing in my ears wasn’t maddening ALL the time. There were times when it bothered me less. And that was the thing I had to keep in mind. But the ringing just wasn’t going away, so I let it be.

And I turned my attention to other things. I learned to block it out, to focus my attention on what else  was going on in my life. I figured — and I remember having this thought, one afternoon — that there was more to life than this ringing, and if I just turned my energies and attention to everything else in my life and made it that much more interesting and engaging than the tinnitus, that could save me.

And save me, it did. It didn’t stop the tinnitus, but it gave me reason to look above and beyond. It gave me cause to seek out what else there was in my life, besides this infernal ringing.

So, I guess I did accept the tinnitus on a certain level. But I didn’t accept the limitations it placed on me. I didn’t let it stop me, and I didn’t let it drive me mad. I just decided to quit focusing on it and use my energy on other things.

I reached a compromise with my situation (that inescapable ringing) and my own desires (to be free of the tinnitus), and I found a “Third Way” to go.

The First Way was to fight it with all my might.

The Second Way was to just give up and tell myself there was no hope for me.

The Third Way was to see that Fighting and Giving Up were both no use to me, and my time and energy was better spent focusing on other activities in life that didn’t make tinnitus the center of my attention. I could let the tinnitus be a part of the background, a part of my overall story. But wasn’t the thing that Defined me and set limits on me. It was just there. Not good, not bad, just there.

And that’s when I started getting the part of my life back that had been tied up in the first two Ways of approaching my injury.

Over the course of my life, I’ve been presented with many such choices, and time and time again, I have learned the wisdom of this Third Way. Although I’m sure I’ve read about this approach in some book somewhere, this approach has really emerged (and stuck) out of personal experience — it just works. The other two Ways don’t.

When I make my difficulties the central theme of my life, I cheat myself of the chance to experience life in all its fullness, its richness, all its potential and possibilities. Now, staying stuck in the fight can be tempting. As can giving in to “defeat” and giving up trying. But the Third Way offers something completely different — and far more interesting — that lets me actually live my life. And when I am focused on living my life, the obstacles and difficulties that used to be front and center, have far less power over me. It’s not that they’ve gone away 100%. Far from it. But they aren’t the sole focus of my life and my energy. And I can really, truly live.

Tinnitus music therapy-A do it yourself guide

Just found this on YouTube:

I may try it, myself. I don’t have CoolEdit, but I might be able to figure it out with Audacity.

The perils of pseudo-psychological problems

Something has occurred to me repeatedly, over the past month, as my sleeping habits have improved. Namely, that many of the “mental health” issues I’ve been experiencing over the past several years, have had a distinctly physiological component to them. In fact, at the risk of sounding radical, presumptuous, and heretical – though I’m seldom reluctant to be just that 😉 – I suspect that a ton of my “psychological” issues have actually been physical ones.

I’m sure I’m going to really piss off some of the psychotherapists in the room by saying this, but I have to say that catching up on my sleep and figuring out how to get a full night’s sleep more than one night in a row, has done more for my mental health than two years of therapy.

And no, I did not have a bad therapist. They were great – awesome – and they really helped me a great deal, if only by sitting there and not making fun of me when I talked about this and that.

But let me tell you – as a TBI survivor who had/has a whole raft of physical ailments (chronic pain, insomnia, sensory hypersensitivities, weight fluctuations, heart palpitations, vertigo, tinnitus, and more…), just living with all those issues can really mess with your head. And as long as only the symptoms of my physical distress were being addressed, not much moved.

I did get in touch with my feelings. That’s for sure. I figured out that I actually mattered, and that it was important for me to take care of my own health and well-being, not constantly do the martyr-hero thing and sacrifice my own safety for the sake of others. I had space to learn to look at myself and my life through a less negatively critical eye and consider that maybe, just maybe, I had a right to do more that survive in life. I had/have a right to thrive.

But one of the things I really got in touch with was the fact that my physical well-being is a huge contributor to (and predictor of) how well my mental well-being holds up. When I’m tired and in pain and weak, my ears are ringing like the dickens, and my head spins wildly and I feel like I’m going to fall over every time I move, it’s pretty damned difficult to maintain a positive mental outlook and count my blessings. When I’m not feeling well physically, the chances of me feeling well mentally and emotionally decrease exponentially.

There are some people who manage to keep a cheery, chipper outlook, despite significant physical issues. I’m usually one of those  people, and I usually manage to not let my physical problems bother me. But when I haven’t had enough sleep for weeks and months on end, chances are pretty good that I’m going to feel depressed, anxious, irritable, low — and show other signs of clinical depression.

Okay, so here’s the thing — when I was in therapy with my prior therapist, they repeatedly came back to the suspicion that I was depressed. They asked me a number of times if I thought I was depressed, and if I’d said “Yes,” I’m sure they would have followed up on that, however a therapist does that. And they probably would have plumbed the depths, looking for what it was that made me depressed — some repressed past trauma, some childhood violation, some incident that I’d blocked out to keep from being unhappy.

And lots of talk would probably have ensued. Talk, talk, and more talk.

Now, talking is all very well and good, but as Belleruth Naparstek said at a conference I once attended (and I believe she’s said in her book “Invisible Heroes”), sometimes talking does more harm than good, by dredging up old traumas and forcing you to relive them. That can be very unpleasant, as I’m sure everyone is aware. And for me it’s really problematic, because I prefer to dwell on problems with a solution in mind, and if I’m dwelling on a past incident which cannot be changed (it’s already over and done), I get even more agitated and irate over it.

Some people might say that I’m just not willing to deal with the emotional fallout of misfortune, but I say I’m a solutions-oriented individual and the main reason I think about things, is so that I can change them, so why in the hell would I spend all this time thinking about stuff that cannot be changed? The therapists in the room who would say I’m emotionally “blocked” would probably try to treat me… with more talking about shit that makes no sense for me to talk about.

Make no mistake — I’m not at all reluctant to discuss misfortunes I’ve experienced in the past. But any discussion that takes place with me, has to be about devising solutions and coping mechanisms for the problems I have as a result. I’ve had some really shitty things happen to me, but you know what? It’s over, and I’ve managed to forgive just about everybody in my past for their shortcomings… even myself. The problem is not that I’m represssed. It’s that people want to process the wrong type of stuff with me — problems, problems, and more problems — and my reluctance to discuss stuff I’ve already been through a thousand times in my head is interpreted as repression or avoidance or some other psychological/emotional impairment.

What’s more, when pressed to explore the nether regions of my soul with talk therapy, I tend to get turned around. As good as I am at writing, I’m can be kind of pathetic when it comes to spoken conversation. I have an intensely visual mind, which follows conversations and spoken communication with series’ of images that are like an associational, disjointed movie in my head. I literally see pictures of what people are talking about, and when people start talking about things for which I have no picture — or I have several of them to choose from — it takes me a while to catch up and keep up. It’s not that I’m stupid. Or that I’m slow. I’m just incredibly visual in my own mind, when it comes to spoken language, and visual processing doesn’t lend itself as well to spontaneous conversation.

So, when I’m talking to someone about what’s going on with me, and they start talking about things that aren’t immediately famliar to me — or that I’m not expecting them to talk about — it’s really easy for me to get agitated and introveted. I need time to catch up. I need time to keep up. I need time to translate their words into pictures and process the information visually, so that I can make sense of what they’re saying to me. But I don’t always have that much time, and over the course of my life, I’ve gotten into the bad-but-pragmatic habit of just pretending I know what’s going on, while making mental notes in the back of my mind about what was just said, so I can go back to it later and rethink it all and hopefully make sense of things.

The problem is, in a therapeutic situation where I’m supposed to be making some sort of progress and addressing issues, this really works against me. It tends to make me look reticent and/or like I’m deliberately withholding. I’m not — I’m just trying to process the information and make sense of it. Believe me, if I could answer immediately like other people, I would. But my brain just doesn’t work that way.

I also tend to get really frustrated with myself and get agitated, which looks like I’m uncomfortable talking about certain things. It’s not that  I don’t want to let other people in. I do — more than I can say. But I get so turned around in my head, and I get so upset with myself for not being able to follow, that I start to flail and spin and then shut down. I feel like I’m getting backed into a corner, and I get revved… and by the end of the session, I look like a totally basket case who needs to spend years sitting across the room from someone, before I can get in touch with my feelings.

This sucks on so many levels, I can’t even begin to tell you. The worst thing of all is having someone who is supposedly trained and experienced in these matters misunderstanding, miscalculating, misdiagnosing, and mis-treating conditions which don’t even exist the way they think they do. On the surface, you’re exhibiting classic signs of clinical depression and post-traumatic stress disorder, but underneath it all you’re struggling for words that will explain exactly what is going on with you, and why you’re acting the way you do. And the bitch of it is, because you’re the (sick) client and they are the (trained, experienced, licensed) therapist, you’re not in a position to be taken totally seriously when you do manage to tell them a little bit about what’s up with you. ‘Cause they think you’re seriously mentally ill and you can’t possibly know what your real problems are.

After all, you probably have no recollection of what that nasty-ass uncle did to you as a toddler when your mother’s back was turned.

It’s a problem. I hear plenty of stories about therapists who don’t know  what they’re doing… as well as those who know very well what they’re up to but have no scruples or morals. I hear plenty of tales about over-prescription of medications, as well as  misdiagnosis of mental health issues that have more to do with fundamental differences of information processing, than pathology. The mental health profession has been pathologizing the diversity of human experience for as long as it’s been around — perhaps that’s a hallmark of any helping/caring profession that’s trying to get on its feet. Applying labels like “hysterical” or “deviant” or “sick” to people who are just different from the norm is a time-honored tradition in the mental health field, so there are no surprises there. But it’s a problem that’s been shifting and changing over the past 30 years, and that’s a good thing.

Now, if I can figure out a way to explain to my new therapist the nature and degree of my physical issues, so they can see my issues in light of my insomnia, pain, and physical sensitivities… and not spend an inordinate amount of time focusing exclusively on my past emotional trauma, that will be a good thing.

Blah… blah… blah…

Maybe it’s just the summer, but I haven’t been getting much of anything done, lately. My fire to accomplish at work has faded considerably, and I’m sort of slipping into the doldrums. I’ve been starting out the day with exercise, which is good… but a funny thing is happening, now that I’m waking up more in the a.m.  It seems that that old edgy drive has dulled considerably, and while I’m not as prone to hounding myself over every little detail, I also don’t feel particularly called to Get Things Done.

Is this what it feels like to be “normal?” To not have constant agitation? To not be perpetually on edge over some indeterminate goal? I wonder…

Well, anyway, at least I have been sleeping more, lately. I’m learning how to relax. It sounds odd to me, to say it, but I have had to learn how to relax — doing deep breathing, teaching my body to let go of the tension it’s holding, counting breaths, letting my muscles relax, allowing my body to be supported by the bed, when I lie down to sleep. Such a simple, elementary thing… that I couldn’t do very well at all, until a few months ago.

Well, at least there’s progress…

Actually, come to think of it, I have been getting a lot done — just not in that old frantic-stressed-harried way that used to drive everyone around me nuts. I’ve been doing some reading on neurofeedback therapy, trying to get it straight in my head — the different brain wave patterns, etc. I suspect there may be ways to do this on my own, without needing to seek out expensive therapists who don’t take my insurance. Well, we’ll see.

I’m not feeling particularly driven to pursue it. It would be interesting to know more, but I can wait. There are lots of other things I can do to occupy my attention quite well — some of them having to do with making a living, which is something I mustn’t neglect, no matter now relaxed and un-motivated I am.

Now, if I can just find a way to get the intense ringing in my ears to stop. It’s been particularly loud and obnoxious, and it’s been going on for days, and it’s driving me nuts.

I probably just need to sleep.

I’ll see….

Sleep mask + earplugs = magic

I actually slept for seven hours last night.

Amazing.  I haven’t slept that long without being completely and totally exhausted/depleted/at the end of my rope in quite some time.

I’ve been sleeping in the guest bedroom for the past few nights, so I can sleep through the night without being woken by my partner sitting up late reading, snoring, coughing, or otherwise being human. The only problem is, the guest bedroom has a great view of the back yard, and the back yard is surrounded by trees, and those trees are filled with lively birds that love to awake and sing-sing-sing at 4 a.m. I typically wake up around 4:30, when I sleep back there. I may be able to sleep uninterrupted all night, but the morning is a problem.

So, sleeping in the guest room isn’t necessarily the most sleep-conducive thing to do, unless I go to bed at 8 the night before, which is out of the question. My body just won’t do it. Nor will my mind.

But last night, I had to do something to take the edge off my exhaustion. I haven’t been sleeping very well at all for weeks, now. I have been getting 5-6 hours a night, which is just murder on me, because it coincides with some intense deadlines at work. Not only does the exhaustion take a toll on my cognitive functioning, but it also erodes my mood. Whereas I’m usually pretty “up” and can-do, and my outlook on life is quite open and ready for just about anything (within reason), when I’m over-tired, my mood just spirals down, and I end up in very, very bad places, where no amount of reason or motivation will drag me out.

I noticed it especially last night

I was really feeling good all day, until late in the evening, when I was going to bed. All of a sudden, I was melancholy and blue, feeling sorry for myself and feeling lonely and afraid and overwhelmed. I just couldn’t handle much of anything, and I started to get mired in that sad-sack poor-me swamp from which no good things come. I was starting to get intensely depressed and feel like there was no hope for me at all.

I started to think about my family and how we just don’t connect. I started to think about my new therapist and get down about how the relationship I have with them is an artificial one and no matter how I may feel we’re connecting, they are essentially a professional consultant, and — for my own sake — I need to keep the relationship somewhat arms-length. I started to think about my old therapist, and wonder how they’re doing.

I was spiraling down into that place I’ve often “gone” in therapy… that place where my old therapist loved to “camp out” and plumb the depths of my past, to see what terrible hurt had been done to me. And just as it used to make me really uncomfortable to delve into all that — not because I’m afraid to explore the places where I’ve been hurt (I’m only too happy to do that at times), but because they were making flawed assumptions and reaching inaccurate conclusions about what caused that depression, what was pulling me down, what I needed to deal with.

I can think of many, many instances where I spent a whole hour hashing and rehashing crap that was dragging me down, only to get all turned around and more frustrated… then I had a good night’s sleep, and everything was miraculously all better.

Seriously. I’m not just making this up to make the psychotherapists of  the world feel inadequate. The main problem wasn’t that someone was mean to me when I was ten. It was that I hadn’t been sleeping.

Fortunately, I recognized that I was going there, last night, as all the thoughts and fears and regrets tumbled around in my head like puppies in a basket.

Thankfully I had the presence of mind to notice it AND do something about it

“This is ridiculous,” I said to myself, as I sat in the bed with my journal, ready to write some maudlin entry about the day. I had had such a great day — clipping along, getting things done, making good progress… only to crash at the end. I could tell very clearly that I needed to sleep, and I knew that I needed to do something about being woken at 4 a.m. by exuberant birds.

So, I pulled out a sleep mask and earplugs I picked up a couple of months ago. I had tried to use the earplugs before, but they felt strange in my ears, and I hadn’t tried again. Last night, I was beyond caring how they felt in my ears, and I fit them in as far as they could go. I also found an extra fan and turned it on low — to circulate the air in the room and to drown out background noise. Then I pulled on the sleep mask, laid back, and counted my breaths that were echoing loud in my ears.

One of the problems with wearing earplugs with me, is that it makes the tinnitus louder. I have constant ringing in my ears, which gets almost deafening when I stop up my ears. It’s the craziest thing, and it drives me nuts. But last night, I was in no mood to care. I just laid back, focused on my breath, and dropped off to sleep.

And wonder of wonders, I actually slept till nearly 6 a.m. A record for me lately.

And I’m feeling great. Really ready to take on the tasks ahead of me today and make some good progress. That’s a good thing. Because today is D-Day for this project. Deadline Day. And I have to be sharp. Dullness is not an option.

Tomorrow I’m going to try the sleep mask and earplugs again. Little by little, I’ll work my way back to being able to sleep. And take care of all these little niggling sleep-related problems as I go. It just amazes me, how much a good night’s sleep does for my mental health and overall performance. It’s like night and day.

Sleep matters

When I’m overtired, I become moody, can’t focus, have problems with thinking tasks, become over-reactive, and I have a tendency to melt down. It gets ugly pretty quickly, and then I have to work double-time to make up for what I’ve said and done and try to repair the havoc I’ve created around me.

But when I’m rested, I’m happy, hearty and whole, and no matter what life throws at me, I can handle it. I’m a productive, positive partner and team member, and people love to be around me. No obstacle is too much for me, when I’m rested. And no event I’ve experienced is too big to overcome.

Which makes me wonder how much unwarranted exploration I’ve indulged in, during past therapy sessions, when I was trying like crazy to understand why I was so depressed and down… why I was struggling so. I overturned all kinds of rocks and plumbed the depths of my aching soul… and was unable to come to terms with just about anything I found there.

But magically, when I slept and had enough rest, suddenly it all became clear. And I could not only deal with what I found, I was also able to use it and change it and shift it and have it be an asset, not a liability in my life.

And I wonder how many other folks have similar issues to mine — psychotherapy clients struggling with lots of stuff not just because of the nature of the events, but because they haven’t slept well in weeks, if not months and years… and psychotherapists themselves being thwarted in their work because the person across from them is physically incapable of a positive, healthy outlook on life.

If I were a psychotherapist…

One of the first things I’d do in dealing with my clients, is find out how they’re doing physically. I’d find out of they’ve been sleeping, how they’ve been eating, if they’ve had much exercise. I’d find out what their physical health is like, find out when they’re at their best and when they’re at their worst, and try to schedule time with them when they were at (or near) their cognitive peak — or at the very least, avoid seeing them when they were at a low point.

I wouldn’t waste anyone’s precious time, processing their “stuff” when they were over-tired or hadn’t been eating or exercising regularly. And I wouldn’t agree to see someone who wasn’t taking care of themself. I suppose I would start out with a new client who wasn’t in the best of condition, but if they persisted in neglecting their bodies and not getting enough sleep, I would drop them like a hot potato. Sure, they would be a natural source of unending revenue, but if I only took clients who were likely to need my help till the end of their born days, I’d be a pretty crappy therapist.

Most of all, I’d focus on the sleep thing. Especially if someone had sustained a TBI. Sleep deprivation makes you crazy, overly suggestible, unpredictable, and easily manipulated. Spy/intelligence agencies have known that for years, and they’ve used it to their advantage. But getting enough rest each night is one of the primarly building blocks of good health. If you don’t care about your health — mental or physical — then how much you sleep shouldn’t matter. But for me, it matters a whole lot.

And I look forward to getting more of it.