Well, why didn’t they just SAY so?

People need to talk so others can understand
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.

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Thorough TBI Recovery – One complete experience at a time

Soak it all in — all over again

So, I’ve been thinking about TBI recovery a good deal, lately. I go in fits and spurts — I’ll go for months, not wanting to think at all about TBI recovery, then I’ll go for months thinking almost exclusively about it.

Now I’m back to thinking about it, and I’ve reached a somewhat different conclusion about what makes for a good recovery, than I had in the past. Just so you know, I speak from my own experience, but what I’ve found could just as easily apply to others, so use what you can, and ditch the rest as needed.

Basically, I’m now of the opinion that recovery from brain injury is very similar to growing up all over again. When we are infants, our brains are undeveloped in terms of physical and social and emotional ability, and we spend the next several decades working on those abilities. Some of us continue to learn and grow, continuing the learning process well into advanced age.

Some of us decide that once we’ve “got it down”, we don’t need to learn anything else, and we prepare to retire, hit the golf links or bocci ball turf or shuffleboard alleys. I think that given the prevailing culture, which has long told us that once you get to “a certain age”, your brain just doesn’t learn new things as well anymore (that old dog new tricks line), a lot of us automatically mentally head for the retirement home, at a certain point in life. A lot of actually start moving in that direction early on.

Those folks are often the ones who believe that you have what smarts you have, and you don’t ever develop any more. These folks have a “fixed” mindset. Versus the folks who believe that nothing is set in stone, and we’re always learning and developing new skills and abilities. These folks have a “growth” mindset. Carol Dweck talks about this in her book Mindset, which I haven’t read yet, but I hope to within a few months (maybe weeks).

Experiencing a brain injury is a bit like growing up all over again. It’s like going from an adult to a child, in some ways, where you have to re-learn all sorts of things that you used to know “cold”. For people who aren’t oriented towards growth and change, this can be devastating. It’s also problematic that brain injury can blind you to alternatives and options and keep you in a very limited frame of mind that is addicted to things being “fixed” and set and stable.

The problem with needing things to be “fixed” and set and stable, is that it just doesn’t happen that often. And when it does happen, it doesn’t last. So, you have to keep adjusting and adapting… whether you like it or not.

If you want to get back to being and functioning like an adult, you have to do that. There’s no other option — you’ve got a renovated brain, so use it or lose it.

I’ve come up with a new idea for how I can “use it” and make my TBI recovery more complete. Now that I am able to read books again (I read half a book on the plane while I was traveling for business), I find that I am also able to write again. I used to love to write stories — short stories, even full-length novels. Looking back, they were not very good, and the benefit was really more for me than anyone else. But they benefited me a great deal. In fact, I think that writing really helped me recover through a number of TBIs in the course of my life. It soothed me, and I also believe it developed my brain to see the world in wider ways.

It also opened me up to the idea of having new experiences and seeing them as “fodder” for my muse. I was able to have a whole lot of experiences that would have normally thrown me off, if I had not looked at them as “material” for my writing later on. I stayed open to experience, because I believed my purpose in life was to have those experiences and then write about them later.

Ultimately, I didn’t become the published author I always longed to be. But I did develop a practice that let me make sense of my world in ways that were meaningful to me. And I did develop tolerance for difficulty and frustration. Because, well, that was just part of life, and if I was going to be a good writer, I needed to be exposed to as much of life as I could be.

Now I see that my writing really helped me create positive neural connections, over the years. And the fact that I could not read or write for close to 10 years, really explains why my mind became so fixed, so narrow, so brittle. I wasn’t exercising my “mental muscles” and I was losing what I was not using.

I’m ready for that to change, now. I’ve been writing about my experiences on this blog since 2007, and now I can expand what I write about to include more than what’s in my head. Adding what’s outside of my head, what’s right in front of me, what I am experiencing in my senses, with the same excitement and joy I felt when I was much younger… these are things I believe will help me recover even more.  I miss it, in fact. So, why not start again?

I’m on good footing, right now. For now, anyway. And I’d like to bump up my progress just a little bit more — with complete experiences of all my senses, keeping my whole person engaged — body, mind, spirit, heart — in this thing we call life.

This seems a positive way forward. So, onward.

Own drummer, own thing, own mind, own results

Here’s an interesting revelation that’s come to me slowly but surely, over the past several years of learning to talk to people and learning how to pay attention and understand what the hell is going on around me — lots of people are completely full of sh*t, and they actually have no idea what they are doing… they just put on a good show and hope that everybody buys their “personal branding”.

That’s it in a nutshell. And it’s taken me close to 50 years to figure this out — largely because between my hearing issues and my short term memory failings (I lose most of what I’ve heard within a minute’s time, unless I actively listen and feed back what I’m hearing at regular intervals). I mean, for most of my life, I either wasn’t hearing what others were saying properly, or I was promptly forgetting what they were saying to me… all the while faking my way through life, hoping nobody would notice that I was completely out of it and clueless about what was going on around me.

Then I realized that I was having huge problems that were TBI-related.

Then I got some help with learning to listen and talk and discuss and process information.

Then I started to pick up on what is going on around me.

And now I realize that all the people whose opinions I have been so concerned about, actually don’t count for a whole lot, because they are huge poseurs who aren’t really on top of their game, no matter how they may pretend they are. All those opinions from people who aren’t actually real, to begin with, don’t count for sh*t.

Not anymore.

A whole lot of people in my life are driven by insecurity and jealousy and emotions they don’t even realize they have, and rather than do something about themselves and their own condition, they’d rather tear down others. How pointless is that? Pretty pointless. They could be spending their time taking care of their own business and making their own performance and lives better, but they would much rather spend the time tearing everyone else down.

What.ever.

That’s my big revelation, which I have been aware of for a long time, but now it is really real, and now it feels real, and now I can confidently go about my own affairs, secure in the belief that I actually know better than others, what is best for myself and my own situation, and others’ opinions are not necessarily better, just because they say them forcefully.

One of the things that really brought this home to me, has been a project I’ve been working on, where I believed I needed to hire outside “pros” to do a certain job for me. As it turns out, some of the “trained professionals” who I was looking to, produced worse work than I would do myself. Total waste of time and a real disappointment. Lousy results. I’ve been talking to a lot of “pros” lately, trying to solve some pretty complex issues. But at every turn, it seems that I’m ahead of the game, and they are playing catch-up with me. I have had a number of in-depth conversations with people who have much more experience than me in certain domains, but I’m way ahead of them, in terms of strategic thinking and tactical approaches.

How ’bout that… Who woulda guessed it? I mean, seriously – I was really expecting much more from these folks. They present themselves so well on paper, and they have all the proper accoutrements to make a good impression, but when it comes time to thinking creatively and doing the work, they’re lagging far behind me. It’s crazy. These people get paid to do these things for a living, and I the amateur am actually more proficient at it than they.

If you’re thinking what I’m thinking, you’re guessing that maybe I could go into those lines of business and clean up. Could be… But it actually makes more sense for me to do all these things for myself and save myself the professional services fees. I can literally save thousands of dollars this way, and that’s not a bad thing. I can also make sure things are done exactly the way I want them to be done, which is critical. I have spent so much time trying to explain really basic things to people, it would have been faster and cheaper for me to do it all myself. Getting the right results has been a huge challenge. But if I do it myself, I know exactly what I’m getting.

So there we have it — bottom line is, I should do a lot of things myself and not hire others. If I need to get into massive amounts of work, then I’ll consider looking to others, but they have to be extremely good at what they do. They have to be better than me. For the time being, it makes more sense for me to do things by myself. More control, more influence, less cost, more fun. More results. More satisfaction.

Enough talk. Let’s get to work. Onward.

TBI Issue #5 – Trouble understanding

What’s going on out there? What’s going on in here?

So, I had a pretty good Thanksgiving. It was good to be with everyone, but I also burned through my money on gas and incidentals. It was cheaper than flying, but it’s still expensive to drive all that way.

Anyway, now I’m back and I get to resume my regular routine. I can get back to my daily work and start eating the foods I prefer to eat, at the times I prefer to eat them. I can get back to my usual “grind” which isn’t a grind at all – it’s quite pleasant, actually. I have refined it and honed it, to where I am pretty productive everyday, but at the same time, I also have room to move and breathe and make plans and preparations for what’s next in my life.

I have been thinking a lot, lately, about the issues I have understanding others. I have especially been thinking about the time, back around 1988, when I was in a car accident, got hit on the driver’s side of the car, and all of a sudden, I couldn’t understand what people were saying to me. It was especially difficult with people who had non-American accents – when they were talking to me, it sounded like they kept “clipping out” — like an old movie that has a choppy frame rate. In and out, in and out, getting only small pieces of what they were saying.

It was a big problem especially because they were my boss, and I could not understand what they were saying at all. So, I quit. It was a temp job, anyway, but to quit work… that’s something that was very unlike me.

That’s one kind of trouble understanding – just not being able to hear.

The other kind of trouble understanding (as I think about it) is needing enough time to catch up with what someone is saying to you. That’s what I’ve got going on now.

I often have to ask people to repeat what they said, because I need a minute to switch gears and catch up with them. I’m not stupid. My brain just processes information a bit differently, and that takes a little more time. I’ve tried to speed things up, but it doesn’t always work. It’s especially bad, if I’m in an “open environment” at work, where there are so many, many distractions. That is truly maddening with all the visual and auditory stimuli crowding me, and it makes it really hard for me to understand what people say to me right away. I usually have to ask people to repeat themselves.

I used to never do this. And it was a huge problem for me. In fact, not being able to hear — and never asking others to repeat what they said — had me blocked into a dark corner, where I was pretty much guessing all the time at what people were saying to me and what we were talking about. I have to admit, I’ve gone back to a bit of that — faking my way through. But this time, I’m aware of how spotty my working memory is, and I’m aware of what a hard time I have understanding people the first time they say something to me, so I really work at making up for the lapses. I take steps to actually “get” what others are saying to me.

There are several factors that come into play with me:

  1. Not being able to make out sounds, the first time I hear them.  I actually can’t hear the sounds if I’m not listening closely — it sounds like a garbled jumble of noise, and I have to really attend closely to get what others are saying.
  2. Being subject to tremendous distraction in the environment I’m in. Especially at work, where everything is open and countless sights and sounds are competing for attention. Having visual distractions actually makes hearing harder, because it distracts me from what I’m listening to. It’s really hellish, and as much as I’d like to make the best of my current situation, there is no way. No way in hell. In the spring, I have got to go, if they don’t reconfigure the environment.
  3. Slower processing speed, thanks to multiple concussions/TBIs. It’s bad enough when you can’t make out sounds, and when you have to deal with heightened distractability. But when your processing speed is slower than you’d like… triple-whammy. Everything slows down – it’s just crazy. And it’s exhausting, because I have to work so hard at processing everything. I sometimes feel like people avoid dealing with me, too, because I have to slow them down and our conversations can be so plodding. What fun is that? Not much for them, and certainly not for me.

Small wonder I’ve gone back to faking my way through a lot of conversations. It’s just so laborious at times, and I feel like such an idiot, not being able to “get” things right away. I can fake it through many situations, but eventually people tend to figure out that I’m fudging my way through, and then things start to come down around me.

Small wonder, I do so well with computers and prefer them and their company to real-live people who have no knowledge or compassion about my situation. A computer won’t yell at me and force me to “keep up”. It just says “yes” or “no” and always gives me another chance.

Others try to reassure me that I’m doing fine, that I am not impaired but they cannot see or feel how slow it is for me, and how hard I have to work at things. I try to explain to my neuropsych, but they cannot imagine what it’s like because we always meet under ideal conditions — in a quiet office without any distractions or pressure, and no terrible consequences for screwing up. I would venture to say that I am a very different person in my NP appointments, than I am in the outside world. I just wish I could communicate that to them.

Well, anyway, my work day is about to begin. I am working from home this morning — have a few conference calls I need to make, which requires a lot of listening and understanding. The thing that works in my favor is that I’m talking to folks outside the USA, and we ALL have trouble being understood. In a way, my difficulties make me easier to work with, in that respect, and I can offer my colleagues a lot of leeway they don’t get with my other American colleagues, because most people don’t understand what it’s like to have trouble understanding what others are saying to you.

But I understand. Very well, in fact.

So, now it’s time to go and put that knowledge to use.

Basic ideas behind recovery from TBI

I’m working my way through the Give Back Orlando book Teaching Yourself to Prevent Head-Injured Moments by Dr. Larry Schutz, and making mental notes as I go. I’m also highlighting. And I also need to record some of my own impressions here. So far, I really like the book, and it’s a good reminder as well as an eye-opener about dealing with TBI.

In the “whole document” version  of the ebook, on page 1, Dr. Schutz says this (and my comments are in bold):

Here are the basic ideas behind recovery from TBI:

1. Head injuries don’t heal up. The injury continues to cause problems in your life until you recognize that you have to fix it and get it done. Fixing means finding a better way to run your brain. The fix works only as long as you run it in the new way. So fixing your brain is not a job you finish doing—it’s a way of life.

True – my injuries did cause me problems in my life. A lot of problems, as I’ve had a number of TBIs. I’ve fallen down stairs, gotten knocked out by mean kids, gotten hit on the head and fallen, had sports concussions… and let’s not forget the car accidents. Problems I encountered for practically my whole life include:

  • sensory problems — painfully hypersensitive hearing, experiencing touch as pain, tactile defensiveness, crappy vestibular abilities, trouble hearing and understanding what people were saying to me
  • memory problems & learning difficulties
  • social problems — hard time deciphering what people were saying to me
  • meltdowns and spells of loss of consciousness/bodily control
  • trouble holding down jobs
  • trouble making and keeping friends
  • just trouble

It wasn’t until I started to get my head around the fact that my head injuries had led to these problems — and many more — that I started to feel like I might actually be able to have a decent life and do something about this mess I thought was all my fault.

2. Brain fixes are not obvious. The injury makes your brain send out a signal that you’re doing fine. Those who take this signal at face value don’t realize that the injury messed up their thinking skills, so they don’t learn to fix the problem no matter how many years pass. Survivors only get on top of the problem when they start to recognize that the brain injury is affecting them, and set about finding out what it has done.

Yeah, I’m fine! Or so my brain tells me. This is so true. I have gotten myself into so many tough spots, just because I wasn’t processing the signals properly. I’ve nearly been shot, and I was almost abducted (twice) when I was younger, just because I “boldly” wandered into dangerous territory without guessing things were amiss. I’ve taken on jobs that I had no business doing, and I’ve pushed myself past my limits, over and over and over again, thinking that I was fine and I could take on one more thing. The “one more thing” often pushed me over the edge and ended up frying my system horribly — and sometimes putting others in danger from my meltdowns. But my brain told me I was fine, and I could handle one more big undertaking on 4 hours of sleep!

3. The only good fix for a damaged brain is self-therapy. No doctor or psychologist or therapist, or for that matter, family member or friend or priest or minister or rabbi can fix you, because what is wrong with you is happening inside your head. You are running the programs you created to run your old brain. Those programs don’t work properly on your new brain. Until you learn to re-program the things you do, you’ll go on having head-injured moments, unexpected foul-ups that make your life harder.

It’s good to hear someone say this. I know my neuropsychologist and my therapist would love me to seek as much professional help as I can, and I shall. But there’s only so much someone else can do for me, and they can’t walk around with me, every waking minute, holding my hand, making sure I’m okay. Nor should they. I need to learn to stand on my own feet. Plus, even if I did have someone to assist me at a moment’s notice, they aren’t mind-readers, and they can’t fix what’s wrong — and what only I  know is going on, in there. It’s all happening inside my head, and I usually need to adjust and fix things on a moment’s notice. Trying to explain to another person WTF is going on with me, the context, the texture, the subtleties, is just not practical — or practice-able.

4. Most survivors never figure out how to fix the injury; they go on to have the problems for the rest of their lives. Fixing a head injury is unnatural, and it’s not easy to do. It’s not a common-sense process—if it were, most people would be doing it on their own. It requires watching yourself closely, changing your habits, and developing self-discipline. However, once you set up the new habits, it’s not complicated like rocket science. Once you set up a basic program of self-therapy, recovery begins to grow from there. Your recovery gains momentum, becomes more real to you, and feels more rewarding, the more you work your program.

How true, how true! The one “fix” I’ve found for my own issues, is constant vigilance and developing the habit of paying attention to my thought processes — and my actions. It’s not a natural thing to do, and it’s not easy. But it has to be done. Or else. The good thing is, once I got in the habit of paying attention to those things that were causing me problems, and adjusting as I went, it did become habitual. And my recovery has gained momentum.

5. Most people are accustomed to looking to their doctors to fix them when the problem is an illness or an injury. That is not likely to be a good strategy when it comes to TBI. Doctors receive no training on how to fix this injury, even if they specialized in neurology, psychiatry, or rehabilitation. In the United States, only a handful of doctors and other professionals are experts on how to fix TBI. You probably don’t have any in your home town. Your best bet is to learn how to do the fix yourself, and to get your family to help.

It’s a good thing I’ve never been that dependent on doctors. I guess my long history of TBI contrived to make me too ornery and too spacey and non-compliant, to be a good patient. Which is ironically what has saved my ass, up to a couple of years ago.

But ’round about 2007, I started down this diagnostic path, and I started to really dig into the whole medical thing with TBI and other medical issues I’ve been having. I got it in my head that I needed to give doctors what they needed to help me. But they haven’t had the willingness (the training?) to be of much help to me. Mostly, what I’ve heard from them has been “It’s just stress” or “It’s psychological” or (they don’t say this, but they imply it and their actions say it loud and clear) “You’re just trying to get attention, when there’s really nothing wrong with you.” Maddening. And my little brain has ingested that input and made my failure to get adequate medical help about me, rather than about the shortcomings of the medical system and typical medical training.

I may rail and rant about the problems with doctors, but there’s a part of me that thinks the real problem is me. I’m a bad patient. I’m a head-case. I’m not really in need of help. There are many other people who have real problems, and I need to get out of the way for them to get the help they need.

Unfortunately, after dealing with doctors for the past year and a half, I’ve gotten it into my head that being a bad patient makes me a bad person, that I’m not being helpful enough, that I’m not being “good”. But I have to seriously rethink this. And I have to say that, given my ability to recover and get on with my life, it actually saved me a whole lot of pain and suffering, to avoid the medical establishment, to not expect much from doctors and avoid them like the plague (except when absolutely necessary), and to find my own way in the world.

So far, it’s enabled me to just live my life. Which is more than I can say for how I’ve been feeling (and functioning) for the past year and a half.

6. You should not believe what anyone tells you about TBI. It has become a hot topic lately, so there are now many Web sites distributing partially accurate or even totally bogus information. Everyone claims to be an expert. If you have good sense, you won’t take what I say on faith, either. There are only a few reasonable ways to put confidence in what people tell you. The first one is the approval of professional credentialing organizations. <snip for brevity’s sake> These are major league accrediting bodies in TBI. However, there are also bogus accrediting bodies, so when you check out credentials, you also need to check out the accrediting agencies. Information is also likely to be more reliable if it has been published in a major professional journal. This manual provides you with a set of articles, chapters, and books that are expert sources for the information presented. Watch for the most important journals, such as the Journal of Head Trauma Rehabilitation and Brain Injury. Getting bad advice is awfully easy to do, and it can harm your recovery.

I’ll say! I’m starting to see more and more how lucky I am that I’ve been able to build my recovery outside of the medical/rehab context. Granted, it may have been helpful for me to realize that I had serious issues going on with me as a direct result of head injuries, but I think that not growing up with the idea that I was brain damaged did me a whole lot of good. Even though my brain was telling me everything was okay, when it wasn’t, the fact that I have grown up and moved through my adulthood with this blissfully ignorant self-confidence of mine, has worked in my favor. I haven’t been in the unfortunate position of soliciting information from charlatans and snake oil salesmen. I haven’t made myself dependent on “experts” for my strategies. I’ve been a lone wolf, for the most part, and while things have NOT been easy, I’m sure they’ve been a whole lot less hard, than if I’d been seeking out help on my own resources.

One of the big problems with TBI that I see, is that it makes it all the harder for us to seek out qualified expert help. It makes it hard for us to see what our problems are, in the first place. In order to ask for help, you need to know what exactly the problem is. That’s one of the problems with TBI and the medical establishment, from where I’m sitting — they rely on us telling them what the problem is, but if you are a TBI survivor, you may not even know what the problem is. Conundrum! So you and your doctor end up sitting there looking at each other like idiots, not sure where to begin, or even how to begin.

That’s been my experience, anyway.

So, the next problem that comes up, is that there are these charlatans and poseurs who claim to know WTF is going on with you and how to fix it. They prey on us, telling us what we want to hear, offering us what we so desperately need — “answers” of some kind about what’s going on inside our brains. They give us false hope, and/or they point us in some bogus direction, and/or they take our money, and/or they misrepresent us to insurance companies, so we can’t get coverage or additional help. And we’re screwed. Because we need help, but we don’t know how to get it. And the people who offer us the most are the ones who have the least to offer — and in fact, take away the most.

Like I said, conundrum!

7. You can get rehabilitation for TBI in almost any town in the USA, but most of it is not fully specialized. We have had effective rehabilitation in this country since 1978, and the knowledge of how to do it has spread slowly. I trained under one of designers of the original high-tech program. That approach is still the most effective method we have. If you have the $70,000, you should consider attending that program. It is located at New York University’s Rusk Institute of Rehabilitation Medicine, under the field’s founder, Dr. Yehuda Ben-Yishay. Expert programs are also offered at Barrow Neurologic Institute in Phoenix, Arizona, under Dr. George Prigatano, Robert Wood Johnson Rehabilitation Institute in Edison, New Jersey (where I trained), under Dr. Keith Cicerone, or Mount Sinai Hospital in New York, under Dr. Wayne Gordon.

This just blows my mind — as though it needs to be blown any more. We all have brains. Thousands upon thousands of people suffer brain injury each year. There are ways to fix what’s wrong. But yet, we can’t get easy access to this rehab, unless we have $70,000 and/or insurance that will cover it. Good grief. It’s so crazy and distressing, I can’t even comment on it further.

8. People who find a knowledgeable self-therapy teacher don’t always learn self-therapy. Many of them are not willing to learn. To learn self-therapy, you need to admit that you don’t know everything you need to know about your brain. Some people believe they already know themselves and reject the idea that someone else can teach them about themselves. If you believe this, self-therapy will not work for you. This guide book can help you only if you are open to learning things about yourself that you don’t already know.

Well, I am open to learning new things about myself. I am more than willing to learn. I have over 35 years of evidence that all is not right with me, and I need to make some changes. I’m not proud in this respect. I’m borderline desperate. Which makes me a pretty good candidate for this kind of work. Self-therapy is, as far as I’m concerned, just about the only viable alternative for me at this point, and I’m willing to do what needs to be done. Yes, I’ll seek out help from qualified therapists. Yes, I’ll get help from neuropsychologists. Yes, I’ll do everything I can to avail myself of the resources available to me. But at some level, I’ve got to do the work myself to fix myself. No, I’m not crazy for thinking this stuff can be fixed. It can. People do it. It’s been done. Why not me?

Indeed, why not me? I’m brain-injured, I’m in more trouble than I care to admit, I get into trouble constantly, I have plenty of head-injured moments through the course of each week, and I’m more than willing to do what needs to be done to address the situation. Most importantly, I am not prepared to live my life marginally, missing out on all the opportunities out there to learn and live and experience.

I am not prepared to be anything less than fully functional as a living, breathing, involved human being.

So, it’s time to kick it into gear and get on with the work.

Onward…

Is it me, or is there a constant ringing in here?

I mustn’t forget to mention my tinnitus.  That constant “ringing” in my ears — which is usually more of a high-pitched whine, like a mean-ass mosquito on steroids — has been with me ever since I was a teenager.

It used to drive me NUTS when I was in high school. I couldn’t get away from it. I distinctly remember standing in my bedroom around freshman year, staring at my alarm clock, trying to get my mind off that ringing-whining-high-pitched-humming. I tried putting my hands over my ears. That only made it louder. I tried plugging up my ears with my fingers. That made it louder still. I tried humming and holding my breath. Nothing worked.

I thought for sure I was going to lose my mind… But eventually I just gave up fighting it and decided to ignore it. Listen to what else was going on around me.

That actually helped. If I reminded myself that the ringing was in the background and I didn’t need to pay attention to it, I was able to think about other things. Distract myself. Pay no attention to it. What else could I do? It wasn’t going away. It was always there.

I thought for the longest time that I had caused it by listening to loud music too much. What loud music? I didn’t even have my own stereo with headphones until I was a senior in high school, and then I didn’t listen to much music other than Neil Young, which isn’t all that loud. I did play the radio loud in the car and I turned up my clock radio, but logistically there was no way that I was subjecting my ears to tremendously loud sounds.

The whole tinnitus thing has baffled me for a long time, until I realized that it can be caused by head injury. Hallelujah! I mean, not as in Thank God, but as in, I’m not crazy, and I’m not the only one.

I’ve tried many, many things over the years to stop the ringing, all to no avail. So, I made peace with it, and I put it to good use. Now, I use the ringing as a barometer for how I’m doing. The louder the ringing, the better the chance that I’m over-tired or stressed or fighting off an infection of some kind. When my sinuses are acting up, I can have more ringing, but it’s usually fatigue and stress and an over-taxed system that sets me off.

So, when the ringing gets to be too loud to bear, I take myself to bed. Or take a break. Or just stop doing all the busy work I’ve been using to get my mind off the fact that I’m exhausted, and I’m not doing well.

I’m listening… but I didn’t hear you…

Here’s a common problem I’ve got – and yes, it’s a problem, not an “issue” or a “challenge”.

I’ll be doing something, like writing a blog post or reading something, and someone will ask or say something to me that I’m supposed to respond to.

I’ll say “Yes,” or “Okay,” or something else that indicates that I’ve heard and understood, but I’ll realize a split-second later that I have no clue what they just said to me. And I don’t have the faintest idea what I’ve just agreed to.

This is a problem. It happens all the time when I’m asked to do a chore, take out the trash, feed the pets, or carry something to another part of the house. I will respond as though I heard and understood and agreed and will do this thing. But I won’t have a clue what just happened.

And then I get in trouble, because either:

  • I’ll ask a few minutes later what I was supposed to be doing, which makes it look like I wasn’t paying proper attention to the person talking to me, or
  • I’ll forget what I was supposed to be doing, and it won’t get done, which gets me in hot water

If I can explain to the person talking to me that I’m having trouble processing what they’re saying to me, then that can help. But I don’t always have the time to do that. And sometimes by the time I figure out that I’m lost, I’m in hot water.

I spend a lot of time being in hot water. Especially at home.

At work, this happens periodically, but I can usually cover it up, because I understand my job so well that I can usually figure out ahead of time what I’m supposed to be doing, and then I’ll do it on my own time. Or I can “push back” on the people who are all over me to do something, saying that I need to do it properly, and quit pressuring me, already.

From what I’ve observed, this is what happens when I “lag” with my processing

  1. Someone says something to me
  2. I sorta kinda register that someone is talking to me
  3. After a few seconds, my brain kicks in and starts paying attention
  4. I realize that I’m not paying close enough attention, and I start really tuning in
  5. I realize that the person who is talking to me has said a bunch of things that didn’t register, so I start “rewinding” what just happened to see what I missed
  6. I get a lot of visuals about what I’m being told — different pictures flash through my head, some of them fit what I’m being told, others don’t fit at all — and I try to figure out the context of what’s being said to me… this all happens in split seconds, and it’s usually accompanied by a fair amount of anxiety, because I’ve gotten in so much trouble for getting things turned around, ever since I was a little kid, and I don’t want to get in trouble again!
  7. While I’m rewinding and replaying what happened before, this person is still talking to me, telling me more things I should be paying attention to, but my attention is divided between present and past
  8. Best case scenario: the directive is short and simple and familiar to me… Worst case scenario: what I’m being told is something new to me that I’m not following very well, I don’t have a context for it, and I’m getting all turned around
  9. If I’m lucky, the person talking to me finishes up and believes I understand what’s expected of me. If I’m not at all lucky, I am completely turned around and need to ask for help understanding, I don’t say things the right way, and the person talking to me gets really pissed off at me… starts to yell at me for not paying attention, and tells me I’m pathetic or an idiot or something like that

It’s not that I wasn’t listening. I just didn’t hear them.

Between the ringing in my ears and the many, many ways my senses are working overtime… and the way my brain is working overtime trying to make sense of it all, it takes me a little while to switch gears and get a clue that someone is trying to communicate with me. It’s not that i don’t want to listen — it just takes me a little longer to do it.

I wish the communication process were simpler with me. I think I may start asking people close to me to give me a heads-up that they’re going to say something to me… like I’ve done with deaf folks I’ve known, who have wanted me to stomp my feet on the floor or do something else to let them know that I’m about to engage with them.

Well, there are lots of areas for improvement, and I’m figuring out more every day. It’s a process, really. Something that just develops over time. And if I just don’t give up and keep going and keep trying and keep working at it, someway, somehow, I do manage to get it all sorted.

I am listening… and eventually I will hear you.

TBI Symptom of the Day: Auditory (Hyper) Sensitivity

I’m not sure what’s going on with me, these days, but I have been hearing just about everything around me much more acutely and loudly and with a lot more detail, than I recall in the past. Listening to the radio, I hear all these different aspects of the music that I normally don’t… I hear the individual instruments in the background, all of them in distinct detail… to the point where it doesn’t even sound like a single song, anymore, but a group of instruments each playing their own part.

It’s very trippy. I keep thinking I’m hearing my cell phone go off, but it’s electronic background melodies and harmonies of the songs I’m listening to.

I’ve been hearing my cubicle neighbors really clearly, too, which is fine, except that they’re driving me nuts with their conversations about their trivia calendars. I try to listen to music with headphones on, but somehow their conversations bleed through. I like the people I work with. A lot. And it irritates me that I’m so irritated by them.

I haven’t been much fun, lately.

I’m coming up on my 4-year anniversary of my most recent tbi (I fell down a flight of stairs a few days after Thanksgiving in 2004), and I haven’t been sleeping very well. I try to relax, I try to chill out, I try all sorts of things. But I haven’t been able to really REST, which is a problem.

When I’m tired, everything gets amplified around me. My vision, too. All the colors look brighter. The sounds are louder. The tastes of things I rarely notice are now very noticeable — like the candy bar I was eating the other day — I could taste every major ingredient, and it occurred to me that the chocolate wasn’t the highest quality.

Which is weird. Because I’m not a real candy connoisseur. But I noticed the relative quality of the chocolate.

If I drank, now would be a good time to impress people with my palate for fine wines. But I don’t drink, so I guess that leaves me with candy. Oh, well. The price we have to pay 😉

People seem to think I’m depressed. And the other day someone hinted at whether I might be thinking about ending it all. That really bothered me. WTF? Of course not! Just because I’m low, these days, doesn’t mean I’m planning to check out! Don’t get me wrong… the thought has crossed my mind in the past… especially at times when I realized that the net worth of my life insurance policy was greater than my living worth, and I was feeling like I was letting my family down by not being a better provider. But those thoughts pass. Seriously. I’m not a danger to myself. Am I protesting too much? Perhaps, but no, I don’t want to kill myself.

Not when I’m finally figuring out what’s going on with me and I’m getting help! Fer Chrissakes, it’s taken me 40-some years to get to this place, and I’m not about to just check out because I’m feeling low.

Besides, I feel as though I’ve really been divinely spared a lot of terrible things in my life. Things that went badly for me could have gone a whole lot worse, but they didn’t. And I hung in there, and they got better. When all is said and done, that’s really my whole life philosophy/strategy — just hang in there. Things change. They either get better or they get worse, or they go both ways at the same time. But you never know when things are going to go in your favor, so why not stick around and find out what happens…?

It’s not the most sophisticated or complex philosophy, but it works for me.

Now, if only my hearing would change. Seriously, it’s driving me nuts, hearing every little thing. The sound of the keys clicking as I type is not just the usual clicking. I can hear my fingers making contact with the plastic of the keys, I can hear my thumb brushing along the space bar, I can hear the keys depressing and then clicking against the keyboard base… and the wiggling of the keys has a weird clicky plastic sound that’s very “reedy” and faint. But it’s there.

I just heard my furnace kick in, which is good. It’s getting cold, these days, and heat is good. I hear cars driving on the road near my house, whooshing down the hill as they head into the woods… I hear the baseboard heat kicking in… and the distant sound of a radio  playing. And of course there’s the ringing in my ears. Tinnitus they call it. I call it constant.

“Ringing” is the wrong word for it. It’s not ringing. It’s a constant high-pitched whine that has an almost metallic quality to it. Beneath the high-pitched whine — like a huge honkin’ mosquito always hovering beside my ears — there’s another tone… lower, fuller… again, always there. I’ve had this since I was a kid — when I was a teenager, it used to drive me NUTS!!! I couldn’t stand it!!! But oddly, I got used to it.

It’s really never gone. It just varies in intensity. And when I’m tired and my allergies are acting up, it gets way out of control. The weird thing is, it doesn’t keep me from hearing everything else. It’s like it’s in a different “space” that I hear in… always in the background, but never keeping me from hearing every other sound on God’s good earth.

Good grief!

Well, I know I’m tired, and it’s been a long day, and I have a doctor’s appointment in the a.m., when I’m going to discuss some of my concerns with my pcp, who I actually really like. My doc has got a good manner, and I feel comfortable talking things through with them. I need to do a reality check about some things I’ve been noticing… to make sure I’m not in imminent danger. It sounds serious(?) and it might be. But I won’t know, till I check in.

And it’s definitely tbi-related, so I’m actually looking forward, in a way, to getting to the bottom of the mystery.

I’m being cryptic, I know. I’ll write more later, when I know more. Later

Yes, I’m tired. And overtaxed. I really need to chill for the evening. Eat my supper. Go to bed.

Then go to the doctor and get on with my day.

Onward…