My books have arrived from the library!

I’m really stoked. I finally managed to find a library copy of George Prigatano’s Neuropsychological Rehabilitation After Brain Injury and Prigatano & Schacter’s Awareness of Deficit After Brain Injury.

I’m sure it sounds odd for me to be so excited about getting them from the library, but these are books I’ve been wanting to read for some time. I first came across George Prigatano a little over a year ago, when I was researching brain injury and wondering why in heaven’s name I had never realized there was something “up” with me. I mean, I had a lot of problems when I was a kid and throughout my adulthood. Problems with memory, problems with mood issues, problems with keeping track of stuff, problems with temper, problems with freaking out over every little thing, problems with money management… I get tired just thinking about it all.

I should have realized a long time ago, that all those problems couldn’t possibly have been due to everyone/everything else. Something had to be “up” with me. But no… my broken brain was convinced it was everybody else, not me, that had the problem(s).

Anyway, now I’ve got the books on loan for three weeks — and the past-due fees are high, so I’d better get reading. I’m sure it’s considered a little “blasphemous” and presumptuous for me to be reading up on cognitive rehabilitation and advanced topics that are supposed to be beyond this layman’s brain, but I don’t really care what other people have to say about it. I have access to the information, and even if I don’t understand everything, at least I’m going to check it out.

My wrists are doing a little better. I’ve worked almost 30 hours in the last 2 days, much of that time spent typing, so I still have more resting I need to do. But that will come. Right now, I want to celebrate.

Celebrate life. Celebrate recovery. Celebrate cognitive rehabilitation. I saw my “neuroshrink” today, and we actually had a really good session. I was talking about different events of my past, and I actually got a laugh out of them. A good, hearty, spontaneous laugh, too. In the past, they’ve been kind of reserved and distant, like they were checking me out… not sure if they were going to keep working with me. But today was a good session.

They told me, in the course of our 50 minutes, that considering everything that’s happened to me, my life is a great triumph, not a tragedy. And yes, it’s true! My life is a tremendous triumph, and I’m feeling really grateful tonight that I’ve been able to do as well as I have.

How I’ve been able to do this well — bounce back from multiple mild tbi’s, including sports concussions and falls and assaults and car accidents, and build a life that’s full of activity and love and productivity and, well, happiness… I’m still trying to figure it out.

But if I had to chalk it up to anything, I’d say it’s just stick-to-it-ive-ness. Never giving up. Being tenacious. Stubborn. Hard-headed in the right ways. Trying and trying and trying some more. And never settling for less than I want — and deserve.

Just keeping going… in some ways, that’s the best rehabilitation of all. None of the other approaches actually work that well over the long term, if you don’t have this as the foundation.

But still, tenacity aside, it’ll be good to check out these books. It’ll be good to have some input that comes from outside my own head and immediate experience.

I’m also looking forward to reading more writing from George Prigatano. I have been a huge fan of his for quite some time, and what I’ve read from him I’ve really enjoyed. It might sound odd to talk that way about a neurologist, but everybody’s partial to something. Some folks are into Japanese art, some are into road bikes, some are into Turkish ceramics, some are into Dice-K, some are into the Cavs. I’m into neuroscience. Particularly cognitive rehabilitation after brain injury, and all the fascinating aspects of life that go with it.

And I do mean “fascinating”. The brain really is the final frontier, and despite the fact that everyone has one and we all love to talk about ourselves, precious few of us — scientists and doctors, included — seem inclined to talk about our brains and the way they impact our lives. It’s as though there’s this huge curtain drawn between our white/gray matter and the rest of us… a kind of holy-of-holies veil that keeps us from approaching the Ineffable Massiveness of what sits atop our shoulders and between our ears. I can’t account for the reticence, in general. It’s like everyone is running around talking about everything except their brains… like we’re trying to keep our minds off it.

Or maybe it’s just so close to home that it makes people waaaaay too nervous to approach, and anyway, we’re taught that unless we have degrees and qualifications, who are we to discuss such weighty matters? It puzzles me. We all have brains. We all love to obsess about ourselves and our human conditions. Yet we’ll invest countless hours in dissecting the life choices of Octomom, while remaining oblivious to the Real Drama that takes place inside our skulls, each moment of every day.

I can’t account for it. But it’s getting late, I need to rest, and there will be more time tomorrow to ponder these imponderables. And read the words of  George Prigatano.

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to http://www.givebackorlando.com/, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

  • they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
  • they attracted attention from people who didn’t like what they had to say, who made them take it all down
  • they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
  • they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
  • the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
  • they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
  • some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.

All new me… all the time…

I have been contemplating my situation as an MTBI survivor pretty intensely, lately. Thinking about how it’s changed my brain — not only since 2004, when I fell down a flight of stairs and smacked the back of my head hard a number of times on the steps… but throughout my entire life. After all, I have had a wide array of injuries — I got knocked out, I’ve had several sports concussions, I’ve been in car accidents, and I’ve had other falls.

Head injury has undoubtedly affected my life, and until a few years ago, I had no idea that the problems I’d always had (but never wanted to own up to) were in fact of a common kind and traceable to common reasons — mild traumatic brain injuries.

The more I realize just how much MTBI has affected me, the more I realize that I really need to re-learn how to walk through the world. Not just because of my most recent accident, but because of a lifetime of TBI-related changes to my cognitive-behavioral version of reality. I need to seriously back it up and rethinking just about everything I assume to be true… because so much of it has been shaped by TBI and clouded by a broken brain… and now I have tools — the Give Back Orlando material as well as other info and tools I’ve come across — to repair some of the damage and renew my life.

Some of the repairs are relatively small – like just changing around some of the things I do when I get up in the a.m. Others are larger, like changing direction with my work and being more realistic about my abilities and inclinations. But the bottom line is, I really need to rethink many of the aspects of my life and not take everything for granted, all the time.

The habits of thought and action I have become accustomed to, may be working against me. I know many of them are. So, I need to fix that.

I’ve recently reached the conclusion that MTBI, as “mild” as it may be, has significantly skewed my perception and interpretation of the world around me and it has effectively caused me to live in a different version of reality than lots of other people. Many situations in my life, I now believe, may have been very different from how I perceived them, which has caused me to grow up with inaccurate understandings of others and my place in the world.

Let me explain — I have always had a heck of a time interpreting people’s social cues. I don’t always understand how to make conversation (correction — I very rarely understand how to make conversation) and I don’t always understand what people are saying to me. This has happened for as long as I can remember. It’s also a point of frustration for people, that I don’t communicate as well as they apparently expect me to (while talking, not when writing – one of the reasons I write so enthusiastically is that conversation and spoken communication is such a bear of an undertaking for me).

When I was growing up I was constantly getting things turned around, and people would lose patience with me. They would raise their voices at me — to get my attention or out of mounting frustration. And I would often startle, because I had trouble following what was going on. I’d then get that rush of adrenaline and heart-pounding and all of that uproar in my head and body that told me “You’re in trouble — they’re mad at you, and they’re yelling at you because you’re a bad person.” I thought I was in trouble — that people hated me. That they didn’t like me. That I was being bad and awful and problematic.

But actually, in some cases, they were just trying to get my attention, and they did it in ways that were less gentle than they could be.

This happened over and over and over again. And over the years, when I was a kid, I developed this godawful complex about  being a terrible person, an ogre, a monster… you name it. I was convinced that everyone hated me — teachers, parents, other kids. A lot of them were unkind to me, especially my peers, but my assumptions about being bad and always being in trouble may not have actually been true.

So, I ended up with a variety of complexes and a nagging suspicion that I was good for nothing and just a drain and a chore for everyone to deal with… when actually, I just had a hard time keeping up, nobody realized it, and they did a clumsy job of bringing me up to speed.

In many ways, I think that my MTBIs had a negative impact on my mental health. Depression and PTSD and low self-esteem have all hounded me my entire life, along with a bunch of other conditions that could be in the DSM-IV, but I’m not looking up for the sake of time. I also don’t want to know. Heck, I’m reasonably functional in basic ways… why belabor it with mental health diagnoses? 😉

One of the other byproducts of this cognitive skewing is that some of my greatest skills and talents have been systematically overlooked and underdeveloped by not only the world, but also myself.

That anosognosia business (not knowing what you don’t know) has complicated my life by diverting so very much of my energy into trying to smooth over and patch up my foibles in the areas where I don’t excel (but didn’t realize it), meanwhile diverting so very much of my energy away from the areas where I have the greatest strengths. 

What a waste. All my life, I’ve been trying to make up for what I lacked, which in many cases just isn’t coming back, and in the meanwhile I’ve neglected the areas where I am strongest… thinking I need to be at least 75% all across the board, instead of allowing myself to be at 30% in some areas, while being at 99% in others.

That deliberate focus on making up for deficits at the expense of raw talent is how people dealt with special needs kids when I was growing up — trying like crazy to get them moderately functional where they were weakest and most struggling… all the while neglecting the areas where they/we were highly, highly, almost eerily functional.

Missed opportunities for the sake of common denominators.  For the sake of my sanity, I just can’t contemplate what that’s cost me…

So, now I’m going to do something about it. Because I can. Because I’m entitled. I have a right to do everything in my power to make the most of the abilities I have, while letting the less-strong areas just be. I have a right to tend to myself and gather all the knowledge I can. Even if  I’m not highly educated in a traditional sense, with all the degrees and the certifications and whatnot, I can be highly educated in a personal, modern sense. There is so much great information out there, and I have a knack for reading and digesting things over time — all the while making use of them.*

*Indeed, one of the things I love about the Give Back Orlando material is that it’s geared for self-therapy, and it never tells you “You’re just a peon without a Ph.D — what do you know!”  Dr. Schutz actually tells us what books we can read, and where we can turn for answers, which is truly amazing in the highly (almost rabidly) territorial intellectual property driven world we currently inhabit.

I’ve got my notebooks, I’ve got my library card, I’ve got my file folders and my lists of issues I need to address. I’m paying attention to myself at a much deeper level than ever before, and I’m determined to work at it as best I can, so I can overcome what’s standing in my way. I’m not just going to roll over, saying, “Oh, well, I got hit on the head a lot over the course of my life, so I guess that disqualifies me from living!”

It’s not about that, with me. Hell no! It’s about taking an objective look at what in my thought processes and behavioral patterns needs fixing – and then fixing it as best I can.

Or compensating for it.

Or avoiding situations that play to the parts of me that can’t be fixed.

I have sustained multiple mild traumatic brain injuries over the course of my life. These injuries have altered my perceptions of life around me and fostered erroneous deductions that have led to poor choices and bad behavior. They have also stoked mental health issues that have their root not in what was done to me or what happened to me, but how I thought about what took place in my life. I am a grown-up individual in my mid-40s who cannot afford to harbor erroneous thinking and poorly constructed patterns any longer.

So, I’m going to do something about it. I’m changing my life, one day at a time. One minute at a time. One experience at a time.

But change it, I will.

Completing the rewiring

Well, my old therapist (OT) has now retired, and it’s time for me to get on with my life. OT helped me a tremendous amount, while I was dealing with the initial shock and dismay of the dawning realization that all has not been well in my life, in many respects… and head injuries had a lot to do with it. The availability of a living, breathing person who could sit with me while I talked my way through the ups and downs of the past couple of years was incredibly helpful. And I will miss OT keenly. I already do. My New Therapist (NT) is smart, highly educated, experienced, and apparently quite aware of the level of foolishness that can come from my mouth at times. OT has already talked me back from the edge of really ill-informed decisions/actions several times, and I’m the better for it.

Much as I do mourn the loss of OT — and it is a loss — I do want to get on with things, and stop spending so much time getting in touch with my emotions. I have logistical issues to address that can’t wait. And I need to work with someone who understands that, who understands my unique mental health profile in terms of physical injuries, rather than mental illness of some kind. There are actual structural issues going on with me that have mucked up my thinking and decision-making for a long time, and I need to get myself on a better track.

NT is helping me do that, as only a neuropsychologically oriented therapist can do. A regular “talk therapist” — no matter how kind-hearted and well-intentioned and psychologically experienced — will be limited in what they can offer me… unless they really understand the TBI aspects of mental health.

See, here’s the thing — after having gotten hit on the head a bunch of times as a kid, it seems to me that my development was altered by those head injuries. The thoughts and impressions I had, growing up, were skewed by my traumatized brain, and because I was reacting to and dealing with situations that weren’t actually “true” representations of what was going on, my social and emotional development got skewed, as well. I had such intense, precipitous reactions to so many things, when I was a kid… and that certainly must have shaped me in unique ways. I think it’s fair to say that when I was growing up, I was having a very different experience of childhood than my siblings and peers, so that shaped me in very different ways into my teen years and my adulthood. Which made me a different kind of person — a kind of person very few people understood that well. I’m not sure anybody did, to be honest. Including myself.

I suppose you could say I was developmentally delayed in some respects.  But in others, I leaped ahead of everyone. Looking around me now, I can’t say that my different development has handicapped me. But it has skewed my perception and interpretation of reality — or, at least, my life experience. And because of that, approaching my emotional and mental health is a different matter than doing so with other people who grew up in regular ways with un-injured brains.

Working my way (slowly) through the Give Back Orlando ebook  Self-Therapy for Head Injury I’m really struck by the talk about how an injured brain can get jammed in the “all-clear” position and not realize that it needs to go from autopilot to thoughtful/careful mode.

I quote from Chapter Two: Head-Injured Moments:

~Note: (bold) is mine~

Most of the head-injured moments happen at times when thoughtful/careful mode is needed but the damaged brain doesn’t see that. The most serious problem in TBI is the breakdown of the system that watches to see when thoughtful/careful mode is needed, when the automatic pilot needs to be shut off. After TBI, the brain misreads the situation, fails to see the need for thoughtful/careful mode, and instead stays on automatic pilot. That causes the person to say or do things impulsively, while feeling as if what he or she is saying and doing is perfectly correct. The behavior comes out wrong, but the survivor is left feeling confused about why everyone is getting upset. The reason why is that we are expected to shut off the quick-and-dirty autopilot mode when something important needs to get done properly. In ordinary life, only a slob, or a jerk, or a loser, or a person with a bad attitude–someone who doesn’t care enough to be sure to get it right–would use the quick-and-dirty method when the stakes are high. Consequently, employers, friends, and family end up getting annoyed and then outright angry with the survivor for being so careless. It may take months or even years, but eventually the people in the survivor’s life begin to give up on him/her because of this failure to use normal quality control, this failure to try hard enough to get things right that really matter. Even though the head-injured moments are rare, they have a huge impact over the months and years. And if you watch for them and write them down, you can start to learn how to fix them.

This is really big for me — the last part, especially. It’s big, because here is someone who clearly knows about the chief vexation of my life — my repeated experiences with screwing up without intending to or realizing I had, until after the damage was done… after the words were said or the job was mucked up or the story/joke was told wrong or the errand was forgotten. And the experience of having people just give up on me over time. Parents, teachers, bosses… all the folks along the way who had such high hopes for me, only to see me mess up, time and time again, for no apparent reason.

Laziness? Carelessness? Cluelessness? Who could say? All anyone knew was, I screwed stuff up. All I knew was, if I was given something to do, chances were, I’d mess it up royally the first time around… and have to work my way back like crazy, just to get back to an even keel.

The one thing I’ve had going for me, over the years, is my indomitable spirit. Nothing gets me down for long — not sure if it’s a superior character or the inability to maintain my focus on negativity for very long 😉  (There’s something to be said for being easily distracted — my attention can be pulled away from misery just as easily as it can be pulled away from a task I’ve just started, which is an added bonus.) I’ve always had this sense that, if I just kept going — and used whatever resources were given me — eventually, if I just stuck with it and didn’t quit, I would find a way through.

And it’s been true, for the most part. I still mess up… but I’m doing something about it. And the Give Back Orlando material is an amazing tool to help me take my recovery even further. (Please keep in mind, that I’m only two chapters into the Self-Therapy guide, so my opinion may change later.)

Anyway, back to the rewiring…

I’ve felt for some time, now, that traumatic brain injuries need not be final. Ever since I read Norman Doidge’s book The Brain That Changes Itself, I’ve been convinced that TBI is not the end of the story. Now certainly, some brain injuries are so severe and so thorough that there’s no turning back. But in countless cases, I believe that neuroplasticity (where the brain rewires itself or re-routes/re-maps certain functionality away from injured parts to healthier, more capable areas) can result in restored abilities. The abilities may not be the same, but they don’t have to be gone forever. Different parts of the brain can literally step in to pick up the slack for injured parts… those “parts” being somewhat diffuse and multidimensional in the brain’s own mysterious, inimitable way.

There’s a whole lot to this concept of neuroplasticity — more than I have time and space (and available memory) to fill in here. But the bottom line is, the brain is capable of rewiring itself. And when you sustain a TBI, whether it’s mild or moderate or severe, rewiring is necessary, in order to regain functionality. If the brain doesn’t get rewired, if it doesn’t heal, if it doesn’t evolve and shift to rise to the demands of life outside the skull, then you’ve got problems.

And when you’ve had a TBI, you often don’t even realize that there are problems to be dealt with.

So, you end up spending an awful lot of time wondering why people are mad at you, why your life is all turned around, and where all the money in the bank got to.

I’ve been in that type of situation more than I care to admit. And I still have a lot of territory to cover. It’s a bit daunting at times, because the skewed interpretations of “reality” began with me at a pretty young age, and I have been intermittently (and unpredictably) misreading signals for a very long time. But the point is, now I know there could be — and probably are — issues with my perception that need to be ironed out. I now know that my brain needs to be retrained. Remapped. Rewired. It’s been getting rearranged, on and off, for over 35 years, now, and I still have a ways go to before the wiring is “up to code.”

Now, I know that this “job” of living my life is never-ending. But I like to think of it as a Herculean, rather than Sisyphean, effort. Hercules was the guy who completed his 12 tasks and cashed in. Sisyphus was the guy who kept rolling that boulder up and down the hill, over and over, for ever and ever, no sooner getting it to the top, than it rolled back down. At times, I’ve felt like Sisyphus, but that’s been a feeling, not a fact. In truth, my Herculean efforts — fighting monsters and hauling heavy loads and plowing fields and whatnot — have paid off a great deal. And for all my screw-ups, I have had a lot of successes.

That’s what I need to remember at times, when everything seems to be going to hell, and I’m sitting around feeling sorry for myself. Woe is me… my therapist has left me… woe is me… I’m getting confused and turned around at work… woe is me… I’m exhausted and can’t seem to sleep through the night… woe is me…  Yada yada yada…

This life is a work in progress — emphasis first on work, then on progress. But it is both. I am no stranger to hard work, and I’m not afraid to get my hands dirty. I’m also not afraid to look at my demons and dance with them. I’m not going to let them lead me on the dance floor — this dance is more modern and interpretive than a tango or walz. But it is a dance, no less.  And I need to not get my heart set on sitting on the sidelines while the best that life has to offer passes me by.

Certainly, there is a lot of work to do. But might it not be possible to have a good time, while I’m working? I grew up in an area where there was a lot of farming… a lot of work. People just did what they had to, and you didn’t bitch and moan about the loads you carried. Everyone just assumed that life was full of heavy lifting and hard lessons, and nobody mooned and boo-hoo’ed and wailed and gnashed their teeth about it. Life = Work. That was the deal, and if you didn’t like it, well tough nuggies.

Consequently, people went out of their way to figure out how to make that working way of life into something rewarding and uplifting and fulfilling. There was family and church and good food and community activities and service. There was reward in doing good work and in a job well-done. People didn’t try to get out of doing things — they found ways to make doing things more enjoyable. By turning on the radio. By singing. By coming up with games to play while finishing a job. By contemplating some idea. Or just by getting into the business at hand and immersing themselves in it 100%.

In a way, I miss that orientation in life. The area where I now live is full of great people, but a lot of them are well-to-do and spoiled and unaccustomed to hard work. They somehow think they’re exempt from exerting themselves. In fact, much of this country seems to be like that. People are so accustomed to convenience and customization, they just assume that all the world is going to modify itself to meet their specifications. They’ve had hardship in life. They’ve suffered. People have been unkind to them or hurt them — physically, mentally, spiritually, emotionally — and they deserve a reward or a “break”. And I find myself sometimes slipping into that frame of mind, too — because I’ve had unfortunate things happen to me, I should be somehow compensated. I should have an easier schedule. I should get accommodations from loved-ones. I shouldn’t have to work my ass off to do  basic things that come easily to others. I should… I should…

But that’s crap, and I know it. I’m a worker, at heart. I grew up working, and I feel most fulfilled when I’ve gotten to the end of a day with all my tasks completed and something to show for them. I don’t shy away from hard work — I embrace it and seek it out. If I hadn’t been head-injured so many times over the course of my life, I might have an easier time of making the most of my abilities, but that’s not how things turned out, and it’s counterproductive to focus on that what-ifWhat-is interests me a whole lot more — what I can do, what I can do about my situation, what I can do to improve, what I can do to salvage and redeem the aspects of myself that really struggle at times.

I’m a worker, plain and simple. And I feel best when I’m not shying away from the challenges that present themselves to me. Everybody has some burden they must carry — whether obvious or hidden. I’m not exception, and I haven’t been singled out by a vindictive universe or a punishing Higher Power as punishment for some “sin” I committed in the past. So, I have it hard at times. So what? Who doesn’t?

I guess the main thing about all this, is figuring out not how to avoid difficulty and challenge, but how to make difficulty and challenge work for me. How to have fun with it. How to be uplifted by it, not dragged down. For me, it’s all about transcendence. It’s not like I’ve got all the time in the world to waste. I do have a lot of issues. I have a lot of pain, I have a lot of confusion, I have a lot of frustrations and anxiety, and I’m at a big cross-roads in my life with no idea which way to turn.

But I’m still here.

A friend in their 70s said to me recently, “Don’t forget to have fun, while you can. Life passes so quickly…” It’s true.

Note to self: Today, have fun! No matter what.

Resources for Brain and Spinal Cord Injury

I’m posting this here, so I can find it later

Resources for Brain and Spinal Cord Injury Research

It’s got all sorts of links and other goodies — just the ticket, for when I need to distract myself – which is not always such a good thing, I’ll admit 😉

How I found a great neuropsychologist – and you can, too

I consider myself extremely lucky. Not everyone has the good fortune that I do — finding an experienced, highly competent neuropsychologist who is not only patient and kind and knowledgeable and insightful and observant, but who is also geared towards rehabilitation and empowerment. And who is well-connected in the neurological and psychological world.

I have truly been protected and guided by some Divine Force, in finding this individual. They have helped me in countless ways, and I’d be lost without them.

I found this individual the old-fashioned way — by picking up the phone and talking to people. I was so turned around and confused and frightened and freaked-out, about a year and a half ago, when I realized (like Paul on the road to Damascus) that things were not right in my life, and they hadn’t been for a long, long time. All the stories I’d been telling myself about how I was perfectly fine and okay, and everyone else had the problem, not me… well, they all just fell apart. I had to get help. I had no idea where to turn. I was so flipped out and frustrated and embarrassed and ashamed of myself… here, I was the Big Cheese who supposedly had it all together, and the outside shell I’d built up around me had started to crack into little tiny pieces.

I swallowed my pride and emailed the Brain Injury Association near where I live. They gave me some good info via email and told me to call anytime.

Now, you have to understand, I have a hell of a time talking to people on the phone. I get confused and turned around, and I have a hard time understanding what’s being said to me. Now I’ve learned that the mechanism of my brain that turns sounds I hear into usable information is broken and not working correctly, so I understand why I’ve always had such a hard time grasping what people were saying to me. But 18 months ago, I didn’t know that yet — all I knew was that I friggin’ hated to talk on the phone, I couldn’t understand what people were saying to me, and it sent me into a panic at times.

But then a lightbulb went on in my head — it was perfectly okay for me to call the Brain Injury Association and sound/talk like a raving lunatic (if it came to that), because they were the Brain Injury Association and they specialized in dealing with people like me. Plus, even though I had a hugely difficult time handling stuff, I was reasonably sure that they’d dealt with people who were far worse off than me. Plus, it was their job to provide information to people who are brain-injured. That’s what they were trained to do.

So, I picked up the phone.

And I got honest. When one of the volunteers answered, I did the unthinkable and gave them my name and told them I needed help. How unlike me. Seriously. In the past, I would have muttered and mumbled and beat around the bush and then just hung up. I never would have said I needed help. I never would have given someone my name. No way, no how. But this time was different.

I told them my situation and asked if they could help me. And when they said they weren’t sure, I did the unthinkable again… and followed that up with a question: Do you know who can? In the past, I would have just said, “Well, thanks for your help… have a nice day,” and hung up. And then I would have wandered off in despair, gotten confused and depressed and withdrawn. But this time, I actually followed through.

The person on the other end of the line paused for a moment, and I just hung in there. I was so petrified… it’s hard to explain that level of terror over something as basic as a phone call. It’s embarrassing for me to admit, and I hate thinking about it. But the phone and I usually don’t get along very well. I think that also, being on the phone with a stranger who knew my name and knew I had sustained multiple brain injuries… being afraid that someone would realize who I was or tell someone about me, or someone nearby might overhear my conversation… being so unsure of myself about being on the phone, to begin with… not sure if I was saying the right thing or doing it right or being clear… feeling like I was making a mess of things — again… it was pretty tough.

After a pause, they suddenly thought of someone I could call who could help me. They gave me the name and number of a long-term brain injury survivor in another part of the state, who had lots of experience with tracking down the source of their issues, years after their injury. They recommended I call them, and wished me luck. I took down the name and number and thanked them, then called this person right away. I knew if I didn’t, I’d never do it, and I had to do something.

I called the number and managed to hang in there through the initial awkwardness of repeating my name and my own story. The person on the other end of the line was really, really helpful, and they were able to spend some time talking to me about what they’d been through. They told me about requesting copies of all doctors’ notes after visits, and making sure that I didn’t get stuck with someone who was clueless, and they told me about how they’d been through the wringer with a bunch of different neuropsychs who just didn’t have a clue. And they also gave me some contact information for a neuropsych they’d gone to see, who had helped them.

They said this doctor was in private practice and they were located some distance from me, but they were the best, and they were well worth the effort of getting to. I said I didn’t care about driving — I would willingly go way out of my way to get the right help.

After I got off the phone with this person, I called the doctor and left a message. I gave them my name and told them my situation, and I left my number. Then I let it go. It was the holiday season, and I had plenty of things to keep me busy.

I also called some other neuropsychs and told them my story. They were helpful to varying degrees — in part because once they heard what insurance I had, some of them just disqualified me outright. But others told me what I needed to do, in order to get around the insurance roadblocks, which was helpful.

After about a week or so, I got a call back from the recommended doc I’d left a message with. They said they would talk to me about my situation, and we spent close to an hour discussing the issues I have. I was starting to get a little desperate, because I was going through all of this on my own, nobody else really knew all the details of my situation (I hadn’t yet worked up the nerve to tell my immediate family members), and I was running out of energy and ideas. But by the end of our discussion, I actually felt like there was hope.

Long story short, I had a really good discussion with the doc, and they suggested some alternatives for my insurance situation. But it took me another eight months before I could navigate the medical and bureaucratic red tape to actually get to see them. It felt like it took forever… and in the meantime, I had a couple of really distressing encounters with (the wrong) neurologists, some deeply disconcerting exchanges with individuals who refused to accept I was having problems, a couple of f’ed up job changes (accompanied by the smell of burning bridges), and a whole lot of trying to get my bearings in life.

But now I’ve found a great neuropsych and have had a great working relationship with them. I’m not sure how much longer we’ll be working together, but if we met for a few hours every other week for the next ten years, I wouldn’t regret it.

If you’re looking for a good neuropsychologist — or really, any medical or “caring sector” professional — and you’ve sustained a TBI or some other issue that is not well-understood, you can cut back on the BS by doing the following:

  1. Talk to people who have the same condition as you, who were successful in finding help.
  2. Talk to your local Brain Injury Association folks to find out where to look for help.
  3. Make sure you get copies of all medical records, even if the doctors and their receptionists look at you funny.
  4. Take notes on what they tell you.
  5. Don’t be afraid to seek help elsewhere. Sometimes it just doesn’t work out with a provider, so keep going.
  6. Never, ever, ever give up!

And my ears are ringing

My tinnitus has been driving me nuts, lately.

I just needed to mention that, because it’s one of the most constant aspects of my life experience, and it’s one of the most neglected.

I went to see a neuro once, in hopes of sorting some of this stuff out, and when I asked them about the ringing in my ears, they shrugged their shoulders and said they didn’t know what it might be.

This makes me crazy!!!

Isn’t tinnitus one of the biggies that go along with TBI?

Isn’t TBI a neurological condition?

Aren’t neurologists specialists in neurological conditions?

Why the shrugging of shoulders? Because it’s not posing a danger to my life and limb, or because the neuro is/was clueless about it, or because they have no “cure” for it, so they’re not interested in learning more?

I don’t get it.

I constantly come across people talking about it. Okay, so it’s not life-threatening (that I can think of), and it’s more annoying than anything else, in some cases, but it’s such a part of my life, it seems disproportionately dismisssed.

Enough cursing the darkness. Here’s a candle:

Tinnitus Evaluation and Management Considerations for Persons with Mild Traumatic Brain Injury at http://www.asha.org/members/aud/TinnitusTBI

I haven’t read the whole thing yet, but it’s a start.

And here are Google search results on head injury/brain injury/tbi and tinnitus.

Happy reading, for those afflicted like me.

Light-sensitivity solutions

I have a friend who has an associate who has needed help for a long time, but apparently hasn’t gotten what they needed. This friend-of-a-friend (I’ll call them “Foaf”) is a very unhappy person who is just a drag, even to be anywhere near. I’ve encountered them in passing – literally – when we crossed paths in the past, and they had this really miserable vibe that totally turned me off.

My friend, who has a kind streak that’s almost super-human, has been trying to help them, with varying degrees of success.

A while back, Foaf informed my friend that they think they found out one of the things that has been making their life so hard to handle — when they were little, they got hit on the head with a baseball bat. And they think that their lifetime of problems could trace back to that experience.

My friend has been doing research about head injury, and I’ve been feeding them info as I go along. It turns out that my realizations around my own TBIs happened roughly the same time as this other person’s — was there something in the air/water? They’ve been able to pass along what I’ve given them to Foaf, and I think it’s been helping.

Now, over the course of the past months, my friend has mentioned a bunch of times that Foaf has trouble with light sensitivity. Their choices in life are actually pretty limited because of it, too. They cannot go some places because the lights are too bright. They have a hard time dealing with stuff in general, because of their light sensitivity. My friend asked, a few weeks ago, “Do you think this could have anything to do with their head injury?”

“Yes,” I responded emphatically. It hadn’t occurred to me that they might think it didn’t.

Light sensitivity is a common after-effect of head injury.

At the South Florida Psychology website, they list the following symptoms of post-concussive syndrome:

Symptoms of Postconcussion Syndrome

Symptom Percent of Patients
Poor concentration 71%
Irritability 66%
Tired a lot more 64%
Depression 63%
Memory problems 59%
Headaches 59%
Anxiety 58%
Trouble thinking 57%
Dizziness 52%
Blurry or double vision 45%
Sensitivity to bright light 40%

Even sensitivity to regular light could be a problem. And there are other issues as well, which are too many to go into at this point.

So, what can a person do about this?

Well, first of all

Understand that your vision problem may be neurological, instead of psychological. Nothing makes me crazier than thinking my head injury issues are because of some psychological problem(s) I have. I thought for years that my problems were “character defects” or evidence of mental illness that could be cured with therapy or support groups. While these things have helped me a great deal, understanding my issues as physiological ones lets me think about them differently and take steps to address them concretely, instead of trying to change my thinking or feeling about them.

Next,

See if corrective lenses help. There are a number of options you have.

Irlen Lenses can help. They “filter out the offending wave lengths of light which create [neurologically-based] stress” and givey our brain a break from dealing with crazy light frequencies that you can’t handle.

Amber sunglasses can also help — they are better at blocking certain kinds of light than the green or gray ones. I have amber sunglasses that I put on just about anytime I’m driving durin gthe day. Even when it’s cloudy, I wear them. There’s something about the wavelengths they block that is very helpful to me. In fact, when I’ve gone out on bright sunny days without them, I’ve had a tremendous amount of stress, and oneday when I was driving to work, I had a bit of a meltdown over next to nothing.

It puzzled me at the time, but when I think back, it was a bright, sunny day and I wasn’t wearing my sunglasses.

I’m not exactly sure how a person goes about getting Irlen lenses. I guess you’d talk to your doctor about it. For me, my amber-tinted sunglasses– and understanding that I have trouble with bright light — helps enough to get me through the day safely.

I told my friend about Irlen lenses and amber-tinted sunglasses. They’re going to pass the info along to Foaf. I hope it helps ease their discomfort and makes them a happier person. They deserve it.

Vision-related side-effects of head injury

According to NORA (the Neuro-Optic Rehabilitation Assocation), head injury can affect vision in the following ways:

Vision Related Side Effects of Traumatic Head Injury

  • Field Loss
    • Hemianopsia (Loss of half of the field of view to the right or left
    • Quadranopsias ( Loss of about 1/4 sector of the visual field)
    • Central Loss
    • Sector Loss
    • Peripheral Loss
    • Total Loss of Visual Field
  • Attitudinal Losses
  • Photophobia
  • Reading Disorders
  • Diplopia – Exotropia, Esotropia and Hypertropia
  • Cranial Nerve Paresis / Paralysis III ,IV, VI , VII
  • Small changes in refractive errors more significant
  • Nystagmus
  • Lagophthalmos
  • Dry Eye – Decreased Blink Rate
  • Visual Hallucinations
  • Formed – Objects
  • Unformed – Stars, Lightning Bolts
  • Anisocoria
  • Accommodative Problems
  • Convergence Problems
  • Eye Movement Disorders, Fixation, Pursuits
  • Frequent Headaches
  • Unstable Ambient Vision
  • Visual Perceptual Disturbances
  • Disturbances in body image
  • Disturbances of spatial relationships
  • Right – Left discrimination problems
  • Agnosia – difficulty in object recognition
  • Apraxia – difficulty in manipulation of objects
  • Memory Loss
  • Psychological problems

And this is just with vision.

A tip of one of the icebergs floating in the sea of TBI…

Normal MRI and EEG… or not?

One thing that has saved me from obsessing about my job situation is my neuropsychological fall-out from my TBIs. Not only did my partner finally (after more than six months) get to sit down with my neuropsych and start to ask questions from a qualified health care provider, but my copies of the MRI and EEG results/interpretations came from the hospital, and it appears that my tests were not 100% clear of all disruptions.

It’s been an exquisitely excruciating balance of good news and who-knows-what-kind-of news. And it has totally kept my mind off my job situation, which in my more vulnerable and fatigued moments just drives me ’round the bend. As much as I want to focus on my strengths and keep firm and steady, I still have a tremendous amount of insecurity around how my TBIs have affected me, work-wise, and I have deep-seated reservations about how well I’ll be able to perform, if I’ll be able to keep up, if I’ll be able to be the kind of team player I was before my fall down the stairs in 2004.

But things are moving along with regard to the neuropsychological exam, and good things are brewing there. That promise of improved coping abilities and good information made available in a way I/we can use it… as well as finding out I have a small pineal cyst, and learning that there was some rare theta slowing in one of my temporal lobes, have pretty much eclipsed my vocational concerns.

On an up note, my partner and I had a great session with my neuropsychologist last week. From the mouth of a professional, descriptions of my situation and my “challenges” sound a whole lot less scary, and my neuropsych had straightforward answers and suggestions, where I generally get turned around and agitated and even sometimes a bit combative when pressed for information. My partner got to ask the questions that have been burning in their mind for months and months, and they got total access to the doctor sitting across the desk from them. They got to see that my folder about my testing is 4-5 inches thick, and there are tons of tests I took, all of which rendered pertinent results. They got a real sense for how complex my situation is, and how good my doc is — how they really take their time and make sure they’re thorough and cover all the bases, which is a good thing.

I think it was a total relief for my partner, who was starting to think — I believe — that my neuropsych was lolly-gagging and taking their sweet old time. One other thing that was very beneficial was that the doctor had to take a call and talk someone through the steps of tracking down a loved one who was impaired, and keeping them from being a danger to themself. I’ve had appointments canceled and rescheduled with this doc numerous times, due to things like this, and my partner was thinking I was just being brushed off. When the phone call came in, they got to see the doctor in action and just having that experience really did a lot for their confidence in them.

I think my partner and I both have more good info to work with now, in regards to our marriage, and they can see that the problems I’m having are not necessarily due to my being deliberately stubborn and trying to yank their chain and ignore them. Yes, I can be difficult, but I’m a lot less deliberately problematic than my partner believes. I’ve been catching crap for years about being too inattentive, too oblivious, too lax, too lazy, too unmotivated, too absent-minded, too flighty… and now, at long last, I’m somewhat vindicated. They were told explicitly by the doc that I have trouble understanding spoken language in the moment, and it takes me longer to process information when someone is talking to me. All those times that I’ve gotten raked over the coals for not being responsive enough quickly enough can now be put behind us. We don’t have to do that anymore. And we can slow down. Something about having a doctor communicate the information I’ve been trying to convey over the past year is helping. I’m not going to question that. I’ll take it — it’s a gift.

On the other hand, my other doctor — the neurologist I saw in January and February — seems to have mucked things up a bit. I got a copy of the MRI and EEG analyses, and while they may read as “normal”, they are not without event. My MRI shows a small pineal cyst, and my EEG shows some theta slowing in one of my temporal lobes. In both cases, the anomalies are not great enough to warrant all-out alarm, but they are both something to keep an eye on.

In addition, the neuro wrote up notes from my visit and sent them to my PCP, and their description is not 100% accurate. They focused a great deal on the “rage” issues I’ve been having. I wouldn’t necessarily call them “rage” — just abrupt swings in emotion, in all directions. And they also mis-characterized my family history, making one of my relatives (who has had a lifetime of symptoms and experiences similar to my own, in some respects) look and sound like a rage-a-holic.

Oh        my        God…

Now I have to back-pedal and compose a letter to both my neuro and my PCP correcting the record. It sorta kinda freaks me out a bit. I’ve had so many unproductive relationships with doctors, I can’t even begin to say. Now, I finally managed to find someone I can work with and with whom I have established a decent rapport… only to have this neuro mis-characterize me and potentially undermine that relationship.  It’s bad enough that the neuro misunderstood me and is working off bad information. But now they’ve dragged my PCP into it, too. Ack.

So, my next steps are to communicate my situation in writing. I am going to:

  1. Work through this with my new therapist, who is a neuropsychologist themself, and who knows about TBI and can help me think through my response. I need to correct the record very thoroughly in writing and compose a letter to that effect.
  2. Send the letter to this neuro and my PCP.
  3. Follow up with my PCP about what to do with all this new information. I may need to do damage control. I want to keep the lines of communication open with them and make sure I’m not digging myself yet another hole.
  4. Probably find a new neuro. I really liked dealing with this one, for once, but they clearly were not present and were not dealing with what was in front of them. I’m not sure where they were, at the time we were talking… But no matter. They are so fired, and I’m off to find another neuro.
  5. Check in with my new therapist a lot through the whole process, to make sure I’m not making things worse for myself. That would be all too easy to do, and I want to do things different this time.

What this experience has really taught me — and there are some vital, valuable lessons here — is that I really need to approach my health care with my TBIs in mind. The biggest problems I’ve been having with health care, throughout my life, have revolved around communication. I have never had an easy time of describing my symptoms to doctors, nor have I done a very good job at collecting and analyzing information from them. I can see now that I’ve had a truly terrible time understanding what doctors are saying to me, parsing through it all, and then retaining it to act on it later.

And because I’ve had such a terrible time — all the while looking (to the untrained eye) like I should be more “with it,” so what the hell was I being such a freaking space-case about?and I’ve got a history of various trauma with plenty of PTSD to go along with it, I would get all revved and anxious and become either overly withdrawn or combative in this exaggerated fight-or-flight dynamic that probably every TBI/PTSD person knows all too intimately. And I would either come across as hostile and aggressive, or I would retreat into my shell and not speak up about what was going on with me.

Which never made for very good doctor-patient relations, I can tell you.

Now I need to take a different approach. Put the facts of my situation into writing. Take it slowly and deliberately and seek out help. Because at least that’s a way I can communicate with my doctors with 100% accuracy. And the next time I deal with any doctor, I’m going to summarize in writing my issues and give them to them — along with a note from my neuropsychologist that explains that no matter how bright I may look on the outside, no matter how extensive my vocabulary may be, no matter how conceptually “with it” I may be, my speed of processing is slower than one would expect, my ability to process spoken language in the moment is impaired, and my short-term memory is for shit. And I don’t mean to come across as hostile and argumentative — I just have a hard time dealing with my “asymmetrical” challenges.

The next thing I do  — after I correct the neuro’s info and send it to them and my PCP — is get a brief summary letter from my neuropsych explaining both the strengths I have and the limitations. I cannot see any more doctors until I have that in hand and I can give it to them in advance, so they can understand I am not malingering, I am not deliberately being difficult, I am not trying to make their lives more complicated, I’m not a malpractice risk, I just need help when it comes to communicating, and I’d appreciate it if they wouldn’t jump to conclusions about me, just ’cause I fell down and got hit on the head a lot over the course of my eventful life.

I am so done with dealing with doctors who don’t have all the information and can’t use their heads to observe what’s right in front of them. Maybe that’s not how medical professionals do things, but God gave them two eyes,  two ears, a nose, and a mouth, and it seems to have worked well for millennia, so why not avail oneself of one’s native abilities?

I’m also fed up with not being able to “read” what they are trying to communicate, and being held back by my broken brain’s penchant for meaningless detail. I’m tired of struggling with something I “shouldn’t” have problems with, getting lost… and not realizing I’m lost till several hours after I leave the doctor’s office.

I’m sick and tired of this whole hidden disability trip, all the ignorance, all the half-assed information, all the bias, all the cluelessness… and how the lowest common denominators seem to drive the situation. I’m tired of having to navigate the seas of truly debilitating difficulties, without anyone else realizing they’re a problem for me — and giving me shit because they are.

I am also fed up with doctors who don’t take time with me. I need to figure something out. I had considered double-booking appointments with my doctor — reserving twice as much time with them, so I don’t feel as rushed and I can ask all the questions I need to ask at a speed I can actually sustain. Either that, or I’ll get an “interpreter” to go with me and help me understand what the doctor is saying to me — and who can help me get them to slow down and stop rushing me. I think that having another person in the room with me to help me sort things out may be the way to go.

Honestly, does my health need to suffer, just ’cause someone doesn’t want to slow down? The rest of the world may think so, but I don’t. I’m just not going there. Something’s broken. And I’ve got to fix it.