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…

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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…