Giving up … and then digging in

And one day I’ll reap what I’ve sown

I trade off between giving up… and digging in again. It’s like the action of a piston — up and down, forward and backwards, alternating. AC/DC current. One day, I’m feeling great and I’m on top of the world. The next day, I’m down for the count.

I think this is really natural, actually. All of nature goes through cycles, and as long as it keeps going, it continues to mature and and grow. Evolve.

And I think back to earlier days, when I had no idea what was going on with me. All I knew was, nothing was working correctly. None of the words came out right, and no matter what I said or when I said it, I could find a way to insult or offend or provoke at least one person in my general vicinity.

So, I kept to myself and did a fantastic job of faking my way through interactions. I still do it, sometimes, when I am tired, or I’m just not in the mood to INTER-ACT with people. It wears me out, especially when my senses are out of synch.

Out of synch means I get tired. Getting tired means… I miss details. Missing details means I am having a conversation about something that no one else is talking about. So, I learned a long time ago to appear functional, while everything just flies by me. It’s easier that way. Lonely, but easier.

It’s easy to get defeated by all this. I feel like I am so far behind where I should/could be. My peers are leading full lives – adult lives – and I still feel like I’m making up for lost time. Playing catch-up. Again and again and again. I think I’m doing really well, and I am… then I hit a snag, and it feels like the bottom drops out.

What do I do? I can’t give up, I can’t give in. I have people depending on me. I tell myself that, because it’s true. But I have to tell myself that, because part of me doesn’t believe that anyone should depend on me for anything. But I get up and get out there and take it day by day, and something comes of it.

That something, however, is not for me. I do my part and make my contribution, but in the end, it’s not really for me. It’s for everyone else. It’s like I’m not even registering, some days. When the pain is intense, my feet are killing me, my knees and hips are full of shooting pains, and I can hardly move my head because my neck is seizing up… and my hands and wrists and elbows are all on fire… no, none of what I do is really for me. Nothing is for me. I might as well not even exist, is what it feels like, some days.

But because I play my part, and people depend on me, I keep on. I don’t even know what I would do with myself, if I didn’t have a job where people rely on me, and a spouse who is dependent on me. I don’t do a good job of keeping in touch with my family, and I’ve pissed off a lot of them by saying things they thought were “aggressive” or “mean”, when all I was doing was giving them my honest opinion. I have reputation in my family for being sharp-tongued and inconsiderate, but I honestly don’t realize till afterwards, what I did wrong. One of my siblings’ kids, who has been friends with me on Facebook and has befriended me, took offense at something I posted, and they got really upset with me — over something that I’d meant as a joke. Now that’s one more person I’ve alienated. One less connection I have. My family does not forgive. They hold grudges. There are people in my family who are holding 40-year grudges against me. It’s stupid, but it’s what they do.

Me? I don’t have the energy for that. Or the memory. That’s one good thing — I forget the crap and I can leave it behind me.

So, tomorrow is Monday, and I am back to work at my soon-to-be-over job. They depend on me there. They are upset I am leaving. It’s very strange, because to be perfectly honest, I never developed much of a connection with any of these people. But they seem to love me, so that’s good. It’s all one-sided. Everything is one-sided with me. That flat effect that they talk about with TBI… I have it. But I learned a long time ago to not show it. Not if I want to keep my job. Not if I want to be active in the world.

So, I act. I pretend. I do what others expect me to do, and that’s that. On my own time, I read, I write, I hike. I watch videos about things that matter to me. I figure things out and come up with solutions for problems. And I try to catch up on my sleep.

I don’t care about Netflix. I don’t care about Amazon Prime. I don’t care about Groupon or sports or how “our” teams are doing against the world. I just don’t care. I can sit for hours in silence, just thinking. Or not thinking. Just sitting. All the activity in the world around me… it seems so pointless.

But I do it anyway, because that’s the price of membership. I go along and keep a low profile, meet the social obligations, then withdraw into my world. Where it is safe, and I am not misunderstood.

It’s not sad. It’s not depressing. It’s a relief. I’ve done it since I was young, and unless you do it yourself, it might not seem very healthy. But believe me, it’s the healthiest thing I can do.

To sort out the stimuli, the inputs, the constant barrage of details and facts and figures and whatnot.

To find myself again.

And take a break.

This was one of those weekends, when I was completely off the grid — well, just about. I spent a lot of time in the woods. And in bed. And on the computer, learning things that will be of use to me.

And I found another piece of myself this past weekend, that I’d been looking for — the piece of me that lights up at learning and putting a new idea in place.

What other people choose to do with their time and energy, is their business. I have my own way, and I have my own path. Much of it has more to do with others, than it has to do with me, but that’s my path.

Sometimes forgetting your Self is the best gift you can give your Self.

And then tomorrow, I will dig in again.

The way the brain really works

Time to upgrade the system – because I can

So, something has occurred to me over the past years, with all the new neuroplasticity writing coming out.

At last, science is catching up… which is helpful.

And folks are publishing well-researched work, which is both informative and often entertaining. Plus, “citizen journalists” are spreading the word about breaking stories and fringe reports about things that you don’t normally hear about in the mainstream. And YouTube has stories about people who plainly beat the odds. So there.

Like the woman in China who was born without a cerebellum, but is still walking around like a normal person. She’s a bit unsteady on her feet, but she’s still walking around, which she supposedly would not be able to do without a cerebellum.

Or the Israeli soldier who lost the part of his brain that controls speech… talking into the camera like a regular person. Of course, it would be easier for me to assess his skill, if I spoke Hebrew, but he sounded pretty articulate to me.

Or the young many who had half his brain removed by surgery, who is walking and talking and living his life, albeit a little less smoothly than “normal” folks, but still…

What occurs to me, as I see and hear stories of people whose brains have re-routed the activities of damaged/lost portions of their brains, is that all the parts we think are solely responsible for certain functions — like speech and motor control — may actually be primarily responsible for those functions, but not exclusively. It’s like the brain has main thoroughfares for signals — like a freeway heading to the airport — along with a network of service roads that parallel the freeway and can get travelers to the same destination, albeit a bit more slowly and with perhaps a few more bumps along the way.

The idea that specific areas of the brain are the only sources of certain types of processing and control, is being trumped by emerging data that different parts will “light up” in different ways for different people. The basic functionality is the same, but how it’s done varies from person to person.

It’s just like the shapes and sizes of our organs. People have all sorts of variations in their livers, kidneys, spleens, lungs, heart, reproductive organs, muscular structure, brain… you name it. The pictures we see in the anatomy books are “common denominator” depictions — standards which can vary from individual to individual. And it seems more and more like the same holds true of the brain’s functions.

We’re still learning a whole lot, of course, and more research comes out every year (month?) to update our understanding. And we see more and more evidence that it is indeed possible to retrain the brain to do things it’s not “supposed” to be doing.

So there.

What I take away from all of this, is that I need to not settle for a “new normal” that leaves me exhausted and dull at the end of each day. I’m looking into ways to strengthen my thinking and improve my endurance, and also to find better, more efficient ways to think. I’ve been adjusting to head trauma since I was a young kid, and I believe it’s led me to use thinking processes that aren’t quite as efficient as they could be. And there are definite areas of deficit that have been with me for a long time — like being very distractable and losing track of where I am in an extended process.

I’ve got this new job ahead of me, and I want to do my best.

Time to recruit more parts of my brain to do the thinking job better.

Onward.

Type A Personality with a TBI? You’re a GREAT candidate for recovery – Part 1

rat-brain-dendridic-changes

If rat brains can change, due to environmental enrichment, so can ours — click to read about helping with stroke (which also applies to other sorts of brain injury)

I’m pretty much of a Type A person — although my competitive streak targets myself, rather than others.

Wait, no… I do instinctively compete against others, as well.

I must admit, I’m happiest when I’m Alpha. This is not in a mean-spirited way or in a way that is driven to destroy everyone around me. I’m just happiest when I’m at the top of my game, and the person I compete against most, is myself.

Anyway, I believe that Type A personalities have a special proclivity to TBI / concussion, because we push it. We take chances. We test the limits of the envelope. And we do it with a single-minded focus that blocks out all dangers… sometimes till it’s too late to protect ourselves.

And then we can get hurt. Frequently. We can end up with persistent symptoms, because on top of getting hurt, we haven’t taken time out to rest, and that concussion / TBI is telling us to keep going at an even faster pace.

See, that’s the thing with concussion / mild TBI — all those chemicals released in the injured brain are inciting an organic fight-flight response that impels us to go-go-go. I personally believe that response is due to an evolutionary advantage that preserved the human race over the ages. Once upon a time, when everyday life was a lot more physically dangerous than it is today, our brains had to evolve to get us up and out of dangerous situation ASAP. And those who didn’t adapt to switch into get-the-hell-going hyperdrive, ended up stuck at the bottom of the pile of rubble. Or they got the rest of their body chopped in half by that sword-wielding opponent who gave them a whack the first time.

Back in the day, being overrun by invaders, going to war with hand-to-hand combat, being charged by a predator, and extracting yourself and your loved ones from a natural disaster were all more frequent than they are today. And those whose brains got them UP and OUT — who kicked into GO-GO-GO-GO!!! action, got to live to see another day. I’m no evolutionary biologist, but I suspect that those whose instincts did not get them moving ASAP probably died out a long time ago.

So, small wonder that when you get hit on the head, your brain/body drives you on and on and on, without any apparent reason. The brain is trying to get away from danger. The only problem is, the danger is inside the skull. And there’s no escaping that.

Anyway, in terms of being a Type A personality, we can really harness that drive, that ambition, that impetus, to recover from our injuries. Even if you can’t get access to a neuropsychologist to consult with, there are a number of other options available. Of course, part of the problem is that there are so many options, and not all of them are reliable or credible. Concussion has turned into big business, and there are plenty of people ready and willing to make a ton of money off it. But not all of them know what the hell they’re talking about. As long as they sound authoritative, that’s all that matters to some people.

So, what do you do and where do you turn?

I think a good place to took, is to other folks who have experienced successful recoveries from concussion / TBI. There are books out there, along with blogs. Unfortunately, the discussion can often drift towards commiseration, rather than remediation. People want to be supported and know that they’re not alone. Of course they do. We all do – including me. Unfortunately, a lot of times (and I’m guilty of this), the discussion ends up mired in detailing all the issues, rather than how to fix them.

Now and then, though, you can come across stories of success and triumph. Here’s one paper about success stories you may like. Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series (click to download the PDF). It shows quite clearly that recovery after brain injury is possible, and it’s not a death sentence.

No matter what others say.

This discussion to be continued – click here to read on…

Here are the materials I downloaded in 2010, which you may find useful:

 

 

Type A Personality with a TBI? You’re a GREAT candidate for recovery – Part 2

Improvements in total time to complete the pin-plugging test using long pins for subject CC. Improvements were found after 9 weeks of intervention for the affected hand.

This is a continuation of an extended thought process – click here for the first part.

Science (especially imaging) is starting to reveal what has always been true of the human system. It changes over time, responding to stimuli. The idea that brain injury is permanent and can’t be overcome is hogwash, as evidenced by research, studies (like the one referenced in the image on the right, which shows how Long-term sensory stimulation therapy improves hand function and restores cortical responsiveness in patients with chronic cerebral lesions), and recorded experience. The weird thing is, despite all the studies that are coming out (and have come out for decades) about how the brain does change and adapt, if challenged, there are still those who believe that brain injury is irreversible, and once you lose certain functions, you’re screwed.

Oh, hell no. Sorry, I don’t buy it. I don’t care what anyone says.

Brain injury survivors do NOT need to resign ourselves to living less-than. We do not need to “adjust down” our expectations to a “new normal”. That’s ridiculous. And the fact that so many people have been told they had to do that, and have just given in to doing that… it makes me a little sick to my stomach.

Of course, there are many reasons for this. Lack of information. Overwhelm. Cynicism. Defeat. Lack of imagination. Rehab industry bias against brain injured folks. Etc.

Also, Type A people tend to intimidate people. And Type A people with unresolved TBI issues can be a real terror — hell on wheels. So, small wonder that folks in the rehab business so often encourage us to just accept the “new normal” as “what it is”. We can scare them. Accepting our limitations is sometimes their way of telling us to back the f*ck off and quit intimidating us. It’s a way of seeding doubt in our minds that makes us less confident, less sure, less cocky. It’s a way of making them feel less inadequate — and shifting the power structure of the working relationship from Alpha Us to… them.

Plus, all too often, they have lacking information and poor practices, so they are unable to produce the kinds of results their clients/patients need. They keep trying to achieve results with crappy tools and partial information, which is like trying to run a marathon wearing on sneaker and one roller skate. They keep trying, of course, because that’s what the insurance companies tell them they have to do, and that’s what their peers are telling them to do, and that’s what their industry is instructing them to do. But they can never get the results they’re looking for… which is no wonder, if they’re not willing to test the limits of what is “known”.

So they give up. Because they won’t look any further. Maybe they’re actively discouraged by the insurance industry, which only trusts “tried and tested” approaches. Maybe they’re put off by their peers who are jaded and cynical and uninformed. Maybe they lack intelligence and imagination. Or maybe they just get tired.

Personally, I suspect it has more to do with belief system and poor information, than it has to do with malicious intent. People are just ignorant, in the objective sense of the word. They just don’t have the right information. And not all of them are Type A personalities. So, good luck getting help from someone who is not Type A, when you are a person who’s ambitious, driven, and bound and determined to succeed…

Fortunately, it doesn’t have to be that way — or stay that way — if you’re a  Type A personality.

The Give Back program, which I discovered in December, 2010, has played an important part in my recovery. Just the stated belief that it is possible to recover from Brain Injury was a revelation, after being immersed in a sea of depressing messages like “Well, the brain can’t be changed past a certain point in childhood”… “You might get some of your functionality back, but don’t expect much more” … “You’ll just have to lower your expectations from life” and “Just be happy you’re doing as well as you are.”

It sorta kinda makes my blood boil, hearing all that weak-ass drivel.

Because none of it is true. Just because the charter members of Underachievers Anonymous can’t figure out brain injury recovery, doesn’t mean it can’t be done.

The Give Back materials really overcame those lame objections with actual case studies of folks who recovered successfully and went on to achieve great things. The program also gives you specific information and things you can do to recover. The most helpful tip had to do with building in a feedback loop for my daily life — recording things that didn’t go so hot, and figuring out how I could do them differently next time. I was really into that, for the first few years after I found the materials, but then I backed off on it. I’m starting up again, now that I’m beginning a new job that’s going to put new demands on my system, because it really helped me a great deal in the past, and I have every expectation that it will continue to help me as I move forward.

If you’re a Type A person with drive and ambition and the need to be constantly improving, you’re a perfect candidate for taking your recovery into your own hands and actually succeeding at it.

One of the things that’s really bothered me, over the past several years, is how people tell me now that I’m more mellow than I was, less edgy, less “Type A”. Now, I get that it’s an improvement that I’m not always gunnin’ for a fight, and I’ve backed off a lot of the aggression. But I have also lost the edge that used to keep me on top of things and moving forward. This, to me, is not an improvement. And the longer I recover, the more functionality I get back — and the more I realize I still lack — the more motivated I am to really kick it up a notch.

Discovering Reuven Feuerstein and the Feuerstein Method has been just the boost I’ve been needing to really move forward — possibly by leaps and bounds. Fundamental to the system is a “belief system that holds individuals to be modifiable, as well as amenable to registering and detecting adaptive changes.” That’s a belief I share — it’s more than a belief, it’s a known fact for me. It has been since 1983, when I came across a picture of rat brains that had been changed by being in an “enriching” environment. I’ve been convinced of the mutability of the human system for over 30 years, and I’m living proof that positive change — recovery — is possible.

And just as it’s possible to positively impact our own recovery, it’s also possible to impact others’ recovery, as well. It’s possible to create positive change — transform our surroundings — by our direct engagement. We have to know what we’re looking at, of course, and we have to know how things work. And we have to know how to effectively act for change. The beauty part is, by observing and being open and objective, we can learn as we go and adapt ourselves to our surroundings.

When you’re Type A, you have a certain kind of personality. You have a proclivity for achievement. Why the hell any non-Type-A person would tell a Type A person that something like brain injury recovery isn’t possible, is beyond me.

Never mind all that — On-Ward!

Here are the materials I downloaded in 2010, which you may find useful:

 

Change. It’s up to me. It’s what I do.

Yes, it does

So, it’s a beautiful day. Unfortunately, I only got about 6 hours of sleep last night. I stayed up too late and woke up too early. I’ll remedy that later with a long nap. That’s the plan, anyway.

I’ve got a call in a little bit with a Feuerstein Method practitioner, who helps people rewire their brains with specific combinations of exercises, along with a highly interactive approach. They live relatively close to me. Same part of the state. So maybe I can meet with them.

I’ve been reading up on the Feuerstein Method, and it’s very much in agreement with what I believe about the human brain, the human system, and all the latent abilities we have — just waiting for us to bring them forth. A great in-depth overview of the method’s main assessment “device” can be read here: http://acd.icelp.info/workshops/theoretical-material/lpad.aspx. It’s a lot to take in and digest, but the bottom line is, it’s a system that is based on a “belief system that holds individuals to be modifiable, as well as amenable to registering and detecting adaptive changes.

And that works for me.

Basically, the bottom line is that the human system is built for change, and the Feuerstein Method harnesses that, and then directs it by 1) understanding how a person learns, as well as the degree to which they are able to adapt, and 2) using a highly interactive “mediation” approach between the helper and the person who’s seeking help. It’s mutually interactive approach which makes all the sense in the world to me.

And I wish I’d found it sooner. Something keeps nagging at me about my recovery not progressing as quickly as it could have. I firmly believe the human brain can change dramatically, if it gets the right kind of help. And I haven’t really been getting as much direct help as I would like. My sessions with my neuropsych have been useful in terms of being professionally productive. But there are many other areas where they just cannot fathom the difficulties I’m having… let alone take action to address them. They’re just not that kind of neuropsychologist.

But I guess I had to bump up against the upper limits of my ongoing TBI rehab, in order to get to this point. I’ve pushed the limits of what’s possible in a conventional neuropsychological context, and I’ve wrung more out of that, than I think was ever expected of me. I’ve had phenomenal progress, over the past years, which has benefited me more than words can say.

I’ve also really experienced a great deal of frustration in the process, but that’s not all bad. First, it’s forced me to think critically and come up with my own ideas and approaches about things, where the ones offered me were not working. Second, it’s really anchored a deep compassion in me for others in similar straits. I think I’ve got more empathy for others, now, and I have a better understanding of the difficulties others may face on a regular basis. So, it has been quite useful for me to work with a neuropsych.

On top of that, I’ve been able to have a positive effect on them, so that’s good.

And in the end, it’s taught me to be a lot less trusting, across the board, of “experts” who claim to to have the market cornered on a specific discipline. I tend to be naive and trusting of folks in positions of authority — especially the folks I like and get along with. But they’re as human and as flawed as the next person, so…

Anyway, it’s all connected and everything has its place.

Next…

What’s next?

  1. Getting a better, more in-depth understanding of my deficits — and yes, they are deficits, not just differences or challenges. There are real ways I need to improve, in order to perform at my best and have a high quality of life.
  2. Identifying where those deficits are holding me back, and where fixing them will help me. This is central to recovery, because I have to understand the context and the meaning of my work, in order to stay motivated.
  3. Working on my exercises again. I have gotten away from doing exercises, and I am getting back to them. I used to do Dual N-Back training and some Brain HQ training, which seemed to help me. But I left that behind — I think when I was starting to get better. I often do that — I make progress up to a certain point, and then I wander off and get caught up in other things.
  4. Making sure I get plenty of rest and I eat right. One of the big things that holds me back, is how tired I get. I think this is why I abandon things I enjoy – I get into them, I work myself into a frenzied state of enthusiasm, and then I wear myself out. When I get tired, I feel bad… so the very things that used to give me joy, now seem to make me feel like crap. It’s a recurring cycle, which I can break, now that I understand it.

The thing I need to understand in all this — and remember over time — is that I tend to progress in “fits and starts” and I don’t always need to push myself as hard as I do. And in other times, I need to really push myself much harder than I feel like. I can generally figure out what my system needs, if my head is “not in the mood”. For some reason, it’s contrary.

But that can be a good thing, because it ensures that I still have my own mind, no matter what the rest of the world says.

If I’m going to see change in my life, it’s going to need to come from me. I look forward to finding someone who can work directly with me in a more proactive way, but no matter what, I’ve got to be the one driving the change.

After all, change is what I do.

When dead-ends work in my favor

Note the two tracks on either side that continue forward

My specific discontent with my neuropsychologist is providing impetus to expand and look in more directions for input and ways to progress. That’s working to my advantage, because it’s easier to move on to the next level, when what used to work… doesn’t anymore.

For work situations and professional interpersonal challenges, they can be very helpful.

But in everyday personal connections and relationship matters, not so much.

In the ways they are helpful to me, they have been indispensable.

And in the ways they are NOT helpful to me, they have also been indispensable. Their limitations are forcing me to branch out and seek additional input and help elsewhere.

Which is good. Because there is a whole new emerging world of “brain hacking” that is too “fringe” for them to consider seriously. They almost can’t consider it, because to do so would compromise their professional reputation and put them at risk for losing everything they have worked so hard to build up. They’re a sitting member of a very important organization, so they have to be conservative and avoid any appearances of quackery.

Anyway, I’m digging into new approaches with literally modifying my brain’s wiring and addressing issues that I’ve had for a long, long time. I’m looking at ways of getting metrics on what fundamental deficits I have — and yes, they are deficits, not just difficulties or differences.

They are deficits, and I’m tired of putting them in terms that make them easier to live with and accept. I am tired of accepting my limitations and just putting up with them. And I may have found a way to actually address them at a fundamental, organic, structural way.

More on the Feuerstein Method later.

For now, it’s time for me to be functional and cut this blog post short. I need to get to work, because I’m ending the day early for an appointment with another counselor I see for family / pain / health issues. This counselor poses a completely different set of challenges for me, and it’s actually good practice for me to critically assess what they tell me and figure out if I agree with them, or not. A lot of times, I don’t, and it really tweaks me. It puts me in a foul mood.

Today I want to do things differently. And so I shall.

Onward.

When getting no help is the best help of all

Well, that was no help at ALL — or was it?

I had a really good session with my neuropsych last night. But not for the reasons you might think. I came away with a renewed sense of really being capable of dealing with things on my own. In terms of having someone to bounce ideas off of, as well as sorting through the professional social landscape, they have been incredibly helpful to me.

I’ve been having a lot of physical/logistical challenges, lately. Vision, balance, headaches… feeling not-quite-here. It’s been pretty distracting, and it’s been adding to the overall burden of my daily life. The job changes and my spouse’s mental/cognitive status have been putting a lot of pressure on me. And I’d like to clear out whatever physiological and logistical issues I can, so that I can free up more energy to deal with the bigger emergent issues in my life.

The issues are good, as well as bad. I have a new job coming up, and I want to be in top shape to step up.This is really important to me — a new chance to really jump-start my life to where it should be, by now. My TBI in 2004 not only took the wind out of my proverbial sails, but also blew directly against me… alternating with stopping completely, so I was stuck in the doldrums.

So, now I have a chance to get back. I’m feeling a little pressure — but even more than that, a huge sense of promise, that I want to live up to, to my fullest.

So, I had gone to my neuropsych appointment with the hope of discussing these issues with them and coming up with some solutions.

However (and I’ve known this for years), they are a particular brand of “mind-only” Buddhist and they believe that we create our worlds with our minds and thoughts, and the difficulties I’m having are just exacerbated (if not created) by my having a skewed understanding of myself, who I am, and how things “should” be in my life/the world. They’re also very much into the idea that we create suffering in our minds, rather than it coming from the outside world. And that’s about the most bizarre distortion of Buddhism I’ve yet to hear. It’s common with American Buddhism, which is a strangely morphed version of “the original” that has people outside the West shaking their heads in bafflement. American’s (and perhaps a lot of Westerners) have their own spin on suffering and its causes, that is unique to them… not to Buddhism.

I’ve been through this kind of exchange with them in the past, and it always leaves me frustrated and exasperated. And it makes me want to fire them. I go to them for help with very real issues that I am reluctant to share (and have difficulty talking about), and all they can tell me is, “Change your perception of your difficulties, and that will relieve your suffering.” Oh My God. I just re-read that, and it sounds so ridiculous. Ludicrous. And it could tweak me into a migraine. But I’m not going there, right now, thank you very much

I’ll resist the impulse, because there’s a valuable lesson coming from this.

It’s a very strange sort of dissonance that takes place in that office, some days.

I have the hardest time actually telling people about my difficulties, and admitting how hard things have been for me. It’s so much easier to just cover it up and suffer in silence. Not always suffer, but just suck it up and deal with it. But there are times when I reach a point where I just can’t hold out anymore, and I need to discuss my concerns with someone — and also come up with a plan of attack.

So I work up the courage to go to their office with the intention of finding solutions to issues I’m having, which have been a huge source of distress to me. And we end up talking about how I perceive these issues that are causing me so much distress… “showing” me how my attitude is actually adding to my discomfort. I could be wrong (and I often am because my judgment gets all turned around and paranoid and narrowed, especially lately), but they seem to be encouraging me to acknowledge things as they are, see the hardships and accept them, and not let them get me down or stop me from just living my regular life.

Oh my God. Some days it is so exasperating. I’m genuinely having issues, and they really seem to think it’s all in my head.

Right.

Should I stay or should I go, now….? (I hear The Clash singing in the background.)

It’s complicated. This individual has helped me tremendously, in terms of getting me back on track with my professional life. That’s where their “sweet spot” is. I don’t have anyone close to me in my life who is actually mainstreamed in the way that I am. My family is very small-town and rural, which is not a bad thing. It’s just very different from my own immediate world. And my family is very religious in ways that are different from my own. With my neuropsych, I have had huge success in sorting out my work life, my relationships on the job, understanding the personalities I’m dealing with, as well as workplace dynamics, and that’s been more valuable than gold to me.

The place where they do NOT help me, is with my logistical issues and all those weird, distracting symptoms and anomalies that keep me on my toes.

Those, I need to sort out in a different way.

Which I shall do. I’ve found a rehabilitative neuro-optometrist near me, and I’m going to make an appointment with them to rule out any vision issues which could be screwing up my balance, as well as messing with my other senses. I just need to rule things out. I hope they take my insurance – I’ve got crazy-good insurance right now that lets me go see any specialist I want, without a referral needed. And I can’t afford a non-insured visit, quite frankly.

I’m also going to follow up with another neurologist about the autonomic testing. And I have a follow-up appointment with the physiatrist in a couple of weeks. I’m going to see if I can move that up — or out — because the appointment coincides with my first week on the job, and I need to clear up my schedule for that.

Plus, I’m really bumping up my commitment to fitness, keeping healthy, and strengthening myself. I’m dealing with the issues with my upper back (my traps are not as strong as they should be, and my upper body needs more strength, while my lower body needs more flexibility to accompany the wider range of activity I’ve been giving it. I no longer sit all day, like I used to, and I’ve been walking/hiking a lot more. So, my legs have to get used to that.

I’m basically taking things into my own hands, health-wise. And I’m investigating new ways to rehabilitate myself.

There’s a world of hurt under the surface of my daily life, and I can’t seem to get help from the “standard set” of people I’ve been looking to. So, I’m branching out and expanding.

And that’s exactly what I’ve been needing to do.

Onward.

A good night’s sleep… and a new direction

zelinsky-eye-info

Eye-opening info on the visual systems and the brain-body connection – click to read this

I had a very taxing day, yesterday. In the midst of telling my manager that I was leaving (and having them freak out, albeit in a professionally muted way), and also trying to get work done, so that I can wrap everything up for folks before I go, I had the constant interruption of people stopping by or sending me messages or emails or whatever, so that they could find out what was up… process… congratulate me… etc.

Everyone has been really great about it. Of course, we’re only in the early stages of grief.

Denial… Anger… Bargaining… Depression… Acceptance.

We’ve only gotten to the first stage (though I know everyone handles loss differently, so the order can be mixed up), and I’m expecting anger, bargaining, and depression to ensue before long.

As long as I’m prepared, that’s the main thing.

The issue is, all the interruptions, all day long, the emotion, the storytelling — getting the sequence of things correct, so that I’m telling a consistent story and don’t sound like I’m lying to people — it’s exhausting. Trying to focus, while people are all worked up and want to talk… good grief, it’s tiring. And by the end of the day, I was wiped.

Which is part of the reason I burned supper… then had a minor meltdown when my spouse started yelling at me… then got all bent out of shape about that signalling the permanent end of my marriage, because I just couldn’t take being yelled at when I’d had such a demanding day…

I felt a nasty migraine coming on, and retreated to my bedroom with the lights off and focused on my breathing and slowing my heart rate, to head the migraine off at the pass. It worked. And my spouse came to find me to talk things through because it made no sense for me to go to bed angry. And then I went downstairs and watched “Happy-ish” which is my new favorite show, because there are so many parallels between the main character and myself.

In the end, we finished the evening on a much more normal, loving note. I got a good night’s sleep and woke up to a glorious day. Glorious! as my elderly aunts used to exclaim, when I was a kid.

I miss those venerable elders. I miss them a lot.

Anyway, while reading The Ghost In My Brain, I found a lot of similarities to the author’s experience and my own — the nausea that sets in when people are talking to you… the balance problems… the fact that driving is actually okay, when you’re not cognitively drained (it’s actually a relief)… preferring blurry eyesight to glasses that make objects sharper, but don’t address the full spectrum of vision issues… and having everything be in slow motion when talking, because there are all sorts of additional processes that need to take place in the background, while you’re working through what someone is saying to you… and then there’s the trouble planning.

The author talks about how he had regular appointments with a Dr. Miller to work through daily logistics with TBI, and he was often not 100% sure he was supposed to be there. I used to do that all the time with my neuropsych, for a number of years. I was pretty sure I was supposed to be there, but I wasn’t 100% confident, so I just went — and if I was supposed to be there, then that was cool. If I turned out to be there on the wrong day, I was prepared to turn around and go home.

Fortunately, we always had appointments on Tuesday afternoons, so it was consistent. If it was Tuesday, then I’d go to their office and wait in the waiting room. Sometimes I would sit in the waiting room for quite some time, if I got there a little late. I wasn’t sure if I should go knock on the door, or if they would come out to find me. Eventually, I got in the habit of knocking on the door — the thing is, I now realize, I would avoid it, because it hurt my ears when I knocked. Driving an hour through evening rush hour traffic really took it out of me, so my hearing was on HIGH. I’d just suck it up, though, and knock. The discomfort of the knocking, though, was actually preferable to the auditory shock of hearing their door open suddenly. It always startled me, because they have one of those noise-dampening brushes across the bottom of their door, and it makes a really loud noise when it opens.

At least, it’s loud for me.

Anyway, all the discomfort aside, I’m considering following up with a neuro-rehabilitative optometrist to see if I actually have vision issues that are making my symptoms worse. After I was hit in the head with the rock when I was 8 (a year earlier I’d fallen down a flight of stairs and temporarily lost the ability to speak), I developed double-vision (diplopia, I think it’s called). I was taken to an eye doctor who prescribed reading glasses, and I’ve worn them ever since.

In recent years, I’ve actually opted for not wearing my glasses whenever I can. It’s more comfortable for me. My glasses help me see things in the distance just fine, but I prefer to do without them. Sometimes I will even drive for short distances without my glasses (if no one is around and the road is empty and runs straight ahead). I have been thinking it’s because I just can’t stand having them on my face… but now I’m wondering if maybe they are actually making it harder for me to see, because they are not allowing my eyes to get the kind of light I need to get.

Reading The Ghost In My Brain, I am finding so many similarities — especially with how vision and balance are so closely connected — that I think it makes sense to follow up with my vision. Just get my eyes checked out for that other aspect. Apparently, there are three ways our eyes help us — regular straight-ahead vision, peripheral vision, and then connections with sleep-wake cycles, balance, hormones, neurotransmitters, posture, etc.

And I wonder if maybe so many of my logistical problems — which I have never been able to articulate well to anyone, because they make no sense to me or anyone else — might have to do with vision issues. From the time I was 8. So, for over 40 years. If this is true, and my visual systems have been impacted, then it makes a lot of sense why I perform so high on visual-spatial tests. I’ve had to develop more abilities to offset the deficits I got from those TBIs. Add to that even more blows to the head, and you’ve got yourself quite a recipe for a very interesting life.

Additionally, I’m looking into the Feuerstein Method, which is a way of “learning to learn” — finding your strengths to offset your weaknesses, and restoring functionality that I really need to have, but which has eluded me.

My neuropsych has been incredibly helpful to me, in terms of helping me sort through all the psychological clutter, helping me retrain my executive function and beefing up my gist reasoning. The thing is, they take that approach, which is psychological, and the physiological aspects fall by the wayside. At least, that’s how it seems to me. And anyway, I do a really poor job of communicating everything that’s going on with me, at times, because I have a long drive to get to them, at the end of usually challenging days, and I’ve been so stressed out over the years with all my old sh*tty jobs, that I haven’t had as much bandwidth as I’d have liked to.

I do a danged good impression of someone who’s got their act together. Because I have to. If I don’t, I can lose my job. I can lose my house. I can lose everything, and my spouse will lose it all, too. So, keeping up the appearance of being on top of everything is my top priority.

Of course, that can backfire, because then you can’t always reveal the areas where you need help, when someone is there to help you.

But anyway, that’s another blog post for another day.

Right now, I’ve got some new lines of inquiry to follow, and that’s super cool. I also have some exercises I can do to help me — Designs for Strong Minds (the site of the rehab person who helped Clark Elliott retrain his brain) has a bunch of exercises at http://www.dsmexercises.com/, and I went ahead and paid the $13.99 for the full suite of exercises. It’s easier and quicker than trying to piece things together for myself. Plus, it’s a deal, because individually, the collections of challenges are $9.99 each.

Even the most basic ones pose some issues for me, although I’ve been scoring 87% or better. A number of my choices have been lucky guesses. I won’t be happy until I can score 100% without doubts. Then I can move on to the next batch. There are exercises for NASA rocket scientists, and other pattern matching things.

And that reminds me about my Dual N-Back training I used to do regularly. I need to try that again. I was doing Dual N-Back training when I was learning to juggle. Now I know how to juggle, and I wonder if my Dual N-Back training is “sticking” as well.

New tests for a new day.

Interspersed with lots of rest.

I’m pretty happy about the progress I’ve made in my life, relative to where I was 10 years ago. Relative to where I believe I could be — and should be — I’m not happy. I know I can do more and I know I can do better. Getting there is the challenge.

And it finding out if I have vision issues that can be fixed, could be an important next step.

Onward!

HERE are the Gist Reasoning Exercises

Gist reasoning is all about picking which pieces of information matter, and which don’t.

Gist reasoning strength is a better indicator of how badly someone has been impacted by TBI, than just about any other measure. Intelligence tests and memory tests don’t do it. It’s how we put it all together, that shows how well — or poorly — we do.

I have created some Gist Reasoning Exercises – a Gist Template – for TBI recovery and Some Gist Reasoning exercises to “Bounce Out” Items that Don’t Belong

Like I’ve said, posting materials online for people to use and improve is NOT rocket science. You just have to put something out there. But this kind of instruction seems to be tied up with folks who have certain professional credentials or special training.* For me, as a person who has been profoundly impacted by multiple undiagnosed and unaddressed TBIs, it makes my heart ache to think of how many others like me are out there not getting the help they (and their families) desperately need, and I cannot just stand by without doing something about it.

So, I’m building tools, based on gist reasoning information I am finding online. Below are links to some scenarios and collections of terms — some of the items matter to the Scenario, some of them don’t. Follow the instructions for each Scenario.

You can either print out the pages, or you can just write it all down — writing it out by hand is good, because it exercises your brain in helpful ways. You may want to show it to someone who has better daily functioning skills than you, to see if you’re on track.*

Check back again in the top menu and also on the Scenarios page for added tools and exercises. Some of them may seem quite rudimentary, but it is what you make of it. You can really “play” with some of them! So, have fun with it.

Just so we’re clear, I have to say the following, so I don’t get in trouble for claiming to fix brain-type things without proper credentials… I don’t have the money to defend against a lawsuit.

*Please note: These exercises are for “entertainment” purposes only, and no guarantee is made about their ability to improve your gist reasoning abilities. I am not a formally trained educational instruction designer. I have conducted trainings for many people in professional settings, as well as taught individuals how to use software. But I’m not formally trained or certified in this kind of work. Like many things in my life, this is an experiment intended to help people like me who have been left behind or overlooked by the established rehab industry.

Augh! Where are the gist reasoning training exercises?

“Getting the Gist” means narrowing down a lot of different details to what is most important, and understand it. If you can restate the gist in your own words and have it mean the same thing as the original, you’re golden. Print out this page to practice your gist reasoning.

Okay, so “we” now know that gist reasoning is a more accurate indicator of how well folks with TBI / concussion can live their lives, than other sorts of testing, like memory and IQ.

Those of us who have been working through TBI issues, lo these many years, have known it a lot longer… A hearty Welcome to those of you in the scientific / academic community who are just now catching up.

And published research also now shows that gist reasoning can be strengthened with exercises.

However, there seems to be a dearth of actual exercises you can do online. That’s odd. Because:

A) Folks with long-term TBI issues can be profoundly marginalized from the mainstream, and the Internet is their one reliable connection to the rest of the world.

B) Online training is incredibly easy to put on the web. It may be difficult to design, but once you’ve got it designed, publishing it is a relative breeze. There are many, many people who do far more complicated things on a regular basis. Finding decent developers is not rocket science.

C) You’d think that everyone in the country would be falling over themselves, getting gist reasoning training online, because helping people with TBI better handle their lives can translate to improved daily functioning, which can translate to higher employment rates, which can translate to more tax revenue and lower needs for social services.

That’s what comes to my mind, anyway.

And yet, looking around online (granted, I only spent a few hours between yesterday and today, but I’m a skilled searcher, and if I can’t find it… well, it’s really hard to find), I’m not seeing any gist reasoning training readily available, other than some that are intended to teach kids how to read, think, and understand.

There doesn’t seem to be much developed for adults, especially those recovering from brain injury.

I did find a Gist Template for kids, which I have modified for TBI-surviving adults and posted on my site here: https://brokenbrilliant.wordpress.com/brain-injury-recovery-tools/gist-template-for-tbi-recovery/ You can print it out and use it to practice your gist reasoning. It’s very simple, but I’m going to try it myself and see if I notice a difference.

Sidebar: You know, I realize now that a lot of what I’ve been doing with my neuropsych over the past 7 years, is working on my gist reasoning. We spend a lot of time with me talking about my days, my experiences, my future plans, and then summarizing them at the end. At times, it seems so tiresome, to have them repeating back to me what I think I just said, but now I understand the method to that madness.

And I’m glad I did not just get up and walk out on them, like I wanted to do, so many times.

I’m glad I just went with it.  Because it works. My deficits that were found, 7 years ago, are still pretty much there without change. However, my ability to live my life fully as well as engage with things around me and also have a higher quality of life than ever before, has dramatically increased. Phenomenally, in fact.

So, being all incensed about the lack of online tools for TBI recovery, I’ve started adding gist reasoning tools to this site. I’ve found some really intriguing ideas, that I think can be replicated… and possibly improved. And there appears to be a massive gap in online gist reasoning training, specifically for TBI survivors. Plus, a lot of this is not rocket science and it can be replicated — even improved upon — quite easily.

Of course, in the coming months and years, I’m sure there will be a flurry of products to help people with this stuff… In fact, there already are tools out there, like Lumosity and BrainHQ. But what about those of us who don’t have all sorts of money to drop… or who have difficulties navigating online payments… or who don’t have (or want to have) Flash on our browsers? Or who just want a “quick hit” of a test to help us sharpen up a bit?

A lot of us are getting left behind – and for no good reason, other than that people either aren’t aware, or they haven’t bothered to try and fix the situation.

But never mind that.  I’m going to do something about it, rather than just bitch and moan.

So, in summary (here’s where I work on my own gist reasoning):

  • I’m really encouraged by the recent research that shows that the degree of TBI recovery is demonstrated by a person’s “gist reasoning” ability — the ability to “get” the point of a mish-mash of details from situations. I’m also very excited by the fact that gist training can — and will — help us to recover.
  • I’m frustrated by the lack of online information about gist reasoning, along with exercises to strengthen it. I’ve searched… and I have not found much.
  • I don’t understand why there aren’t more tools online — especially for TBI survivors, whose main contact with the world may be their computer and Internet connection. Online publishing is actually quite simple, and it could be a great way to alleviate a lot of suffering.
  • Never mind what others are doing/not doing. I’m going to put together my own tools and post them here.
  • This is my first contribution towards fixing a situation that exasperates me: A Gist Template for TBI Recovery

More to come.

Onward.