Easy does it… sometimes, but not all

construction site nighttime scene cranes and lights
Downtime is time for me to get to work – Photo Credit: Pixabay

Ah, the long weekend. Time to kick back and relax. Go for long walks in the woods. Read a book (because I can!). Do some cleaning around the house, take naps, maybe watch some t.v. — no, not watch t.v. Not during my days off. I really value my time and don’t want to lose it to the television.

I’ll be doing more studying and research this weekend, brushing up on skills, also updating my resume. Just having time to think about things.

My new neuropsych is away for two weeks, starting next week, and it’s a bit of a relief. They mean well, but they’re nowhere near as experienced and helpful as my old neuropsych. They’re still learning — they’re 30 years behind my old neuropsych in terms of life and professional experience, and they’re 15 years behind me, in terms of dealing with TBI.

I’ve been dealing with mild TBI my entire life, so I’ve learned a thing or two. They’re an outsider looking in, and they’re also very much into mainstream medicine, with a point of view that’s very urban, upper-middle-class, intellectual, academic, and aspirational.

I think our class and cultural differences are pretty pronounced. I come from a farming background — rural, self-educated, self-sufficient, and well familiar with hard knocks and having to scrape your way up from the very bottom of the barrel — not once, but many times over. The older I get, the more important this perspective seems to me. And the more annoying it gets for someone who knows nothing about that way of life, to be assessing and judging me and making their best efforts to assist me.

There’s a whole lot I tell this new neuropsych that they don’t seem to “get”. It’s a little frustrating, especially because it’s important background  or context information that they don’t seem to pick up. Even worse, they don’t seem very receptive to learning about it, coming to understand it. They’re a bit insecure, to tell the truth, which gets in the way of my process.

If you’re going to do something, then do it with your whole heart, with the understanding that you probably don’t have the first clue what you’re doing, at the get-go… but you learn. You learn.

We all learn. That’s how we grow. That’s how we heal. That’s how we heal from TBI. We learn. We adjust. We make changes and adapt, we apologize for our mistakes and mis-steps, and we pick up and keep moving on. That’s the deal. That’s life. That’s how we’re built, as far as I can tell. So, why not just commit to that very human experience, and go for it?

Why not indeed?

Anyway, the next couple of weeks will give me a chance to settle back down. Working with a neuropsychologist on my various TBI issues — my convoluted decision-making process, my impulse control, my difficulties with focus at work, gearing up for a job change, my challenges at home with my spouse — it’s time-consuming and it can be very tiring. So, it will be nice to have a break from that.

I can just be for a while. Move at my own pace. Not have to figure out how and when to slot things into my schedule. To be honest, as much as it works with my weekly schedule, taking 4 hours out of every Tuesday evening takes a chunk out of my week. And I’m not sure that these sessions with the new neuropsych are really as effective as the ones with the old one.

Then again, I did need to make some changes. I was thinking of terminating with my old neuropsych, six months ago. They they told me they were moving to another position in another area, and that saved me the difficulty of explaining how they were really just annoying me on a weekly basis, and I needed to just take it from there on my own.

It was a boon in disguise.

I do really value the whole process, and it’s important for me to have access to someone with neuropsychological training. So, rather than terminating care, I’ve really been needing to up my own game and take more responsibility for the work, myself.

And that’s what I need to work on, for the next couple of weeks. I’ve been lax about figuring out what I need to focus on, and the times that I’ve showed up completely clueless about what to discuss, those have not had good outcomes. Frankly, they just pissed me off. No excuses here. It was all my doing.

And I need to un-do it. Because ultimately, my recovery is really my own responsibility. They’re just there to help me work through things. I need to get my focus back and quick messing around. I need to properly prepare for those sessions, just as I would prepare for other important meetings. I don’t show up to meetings at work without some idea what I should get out of it. The same should be true for these.

So, there’s my task and challenge for the next few weeks — getting serious and getting lasered in on the issues I need to A) stop creating for myself, and B) start fixing by myself.

I need a little help from my friends, and my neuropsych is the most capable sort of person I can call a “friend” in this specific situation.

So… onward.

Got a fill-in-the-blank Hangover?

This is a great little read from The Paris Review.

Toledo Street Scandal, 1895. Twitter feels like this, some days – though it’s not just the women piling on…

A few weeks ago, I woke up one day feeling awful. I inventoried my symptoms. I didn’t seem to be getting sick. I hadn’t had too much to drink. Was it food poisoning? No—the slight ache in my stomach wasn’t, exactly, physical. And then it all came crashing back over me, and I realized the truth: I had a gossip hangover.

Click here to read the rest…

You know, it’s funny, how humans can be. We genuinely want to be happy, and it makes us happy to see others happy. And yet, we go to great lengths to make others miserable. As though hurting someone else is really going to make us feel better.

In a way, I suppose it does. I mean, consider the popularity of combat sports (which, based on the recent head-hunting fouls by some players, may sometimes include football). MMA, classical martial arts, boxing, rugby… and more… Not to mention Twitter. Everywhere you look, you can find evidence that people seek to relieve their own pain by visiting it on others.

I’m also included in the ranks of fans of the combat sports listed above. I’ll happily sit down to watch an MMA bout, a martial arts contest, a whole night’s worth of boxing, or a afternoon and evening full of overly combative football (e.g. Steelers / Bengals). I’m less “into” rugby (which probably sits on the cusp of not being a combat sport, depending how you play), mostly because I don’t know all the rules and I never acquired a taste for it.

And when players get hit hard enough to get knocked out, yes, I cringe. But I also get a secret enjoyment from it.

Because I’m not the only person feeling battered, these days. And when the players get up and get back in the game, it tells me that I can, too.

Now, if we can find a way to provide this same sort of community and commiseration, without causing brain damage to the players we admire and support, and tossing their futures aside for the sake of the immediate moment…

After TBI or concussion – slower brain, craving stress

brain-firingOne of the amazing things about the brain is that it has an uncanny ability to get what it needs in the short term, but which actually hurt you in the long-term.

After injury, it can push you to do things that will feed its immediate need, but the ultimate result is just not good.

Take stress, for example. And danger. And risk-taking activities. All those things look like either bad habits or a taste for self-destruction. But actually, it can be the brain seeking out the pump of energy it needs to function.

After TBI or concussion, the brain’s “tonic arousal” (its general level of wakefulness) can be negatively impacted. The brain is literally more “sleepy” and doesn’t respond as quickly as it once did. Many concussed folks complain of feeling slower than before their injury, and while there may be a number of different reasons for that, tonic arousal can be a big component.

So, what does our brain do? It seeks out opportunities to come alive — to feel like itself again. WOO HOO! And for a little while, when we’re stressed out over our procrastinations, or our altercations with others, or our other poor decisions made in the heat of the moment, we actually do feel alive. We feel like ourselves.

The only problem is, stress and drama actually keep us from learning. The parts of our brain that need energy and information can be literally shut off, when we’re under extreme duress. And as a result, we can end up repeating the same stupid mistakes over and over again.

Because A) We haven’t had the chance to learn from our last mistakes, and

B) There’s a part of us that actually thrives on those stressful situations.

So, it’s a vicious cycle.

And it applies not only to folks with TBI and concussion, but also those with ADD/ADHD, PTSD, or other brain-related issues that slow them down. When you need to go faster, your brain will do what it needs to get its requirements met. The only problem is, over the long term, this can be… just a little disastrous.

You can read more about this here at:

A Perilous Relief

Just something to keep in mind…

More clarity – yes, more clarity

clarity-of-thoughtSo, I posted a TBI injury and recovery story from a reader, the other day, and it seems like a lot of people think her story is mine. Not at all.

Well, of course, there are some similarities, but it’s her story, not mine. I’ve just gone back and updated it with a notice at the very top and quotes around the story — it was easy to fix.

I wish all misunderstandings were that easy to fix.

I’ve also been fielding some comments in Twitter about things I’ve said, that apparently came off wrong. It is really, really easy to be misunderstood on Twitter. I’ve had people thinking I was attacking them, or their sport, or something else they held dear… and then they “fought back” with both barrels blazing, when all I was doing was raising some questions.

All around, it seems like the online world is just primed for misunderstanding — and consequently, a fight. All around us, we are trained to see opponents and aggressors. And that’s a huge problem, when you can’t even disagree with someone and/or challenge their thinking without being seen as an aggressor (or micro-aggressor). There’s a fantastic article in The Atlantic about this (click here to read it), which I came across a while back. It explains a lot — especially with regard to the younger generation who seem to have amazing potential, but also seem incredibly hung up over every little thing.

All the fighting… good heavens. There’s a reason I backed off Twitter for a while. But there’s so much good research coming out that gets posted there, I have to check it out. There’s seriously some great reading available, thanks to all the tweets flooding my feed. I think the key is to not follow a lot of people who get snarky and vicious and outraged. Especially about politics. ‘Nuff said about that.

Anyway, I’m taking more time to think things through before I say / post / tweet them — or trying to, anyway. It’s hard, when the moment to respond presents itself, and there’s something in your mind that seems 100% appropriate and on-point.

I should know by now that that feeling of 100% certainty is a tip-off to the exact opposite being true. The more convinced I am of something, the more likely I am to be very much mistaken. So, I do know that. But that doesn’t always rule how I react and interact. Impulse control issues and all that.

I guess that’s what keeps things exciting. I just have to keep revisiting things that need a little tweaking… making sure I don’t do more damage along the way. I also need to know when to let it go. Not everything needs to be fixed the way I want it to be. It’s also important that I hold my ground and not give into bullying. Just state my case, say my piece, and leave it at that. If people understand, then great. If not, there’s no guarantee I’ll convince them.

Sometimes it’s best to just move on and leave it at that. Or just stop following some people… which I have been doing regularly, when their tone gets too unremittingly intense.

Anyway, it’s a new day. It’s Saturday. I have some time to myself today, and my headache has abated somewhat. I’ve got some reading I want to do, as well as some thinking. “Tinkering and thinkering” as I’ve heard it described in something I read recently. I’ve always got to be careful when I have free time, because I can very easily get carried away in all sorts of distracting directions.

Last week, I was caught up in researching mind-control techniques of expensive large group “personal growth” programs… and a week before that, I was caught up in some fringe neuroscience that is so far beyond me, it became apparent after two days of compulsive reading that I couldn’t even scratch the surface enough to wrap my head around the name of the phenomenon. Admittedly, it is good for me to range a bit farther afield in my reading and studies, but I can get too caught up in too many fringe activities, and then I lose valuable time for the things that I really do want to work on.

Like the handful of books I’ve started to write and got 3/4 of the way through, but are all waiting for me to pay attention to them again, so I can finish them up.

Anyway, today is different. I’m not feeling great — and ironically, not feeling great is a key factor in how well I am able to focus. When I’m feeling rested and fully functional, I get pulled off base very easily — all that energy gets spread too thinly — and I get nothing done.

But when I’m not feeling great — I’m at maybe 65% today — I know I have to be more deliberate in my activities and pick and choose. So, more gets done. And oddly, I have more clarity when I’m under the weather, than when I’m feeling at the top of my game.

I wouldn’t mind feeling just a little better today. Who knows? Maybe I will by the time the game is on this afternoon. I’ll pace myself. Take naps when I need to. And pick and choose the things I want to do.

That should be good.

Onward.

Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Oldie but goodie – Brain Injury Rehab Ideas from Harriet Katz Zeiner

I came across this several years ago, when I was traveling and needed to fill my mind with things other than overseas business. I enjoyed it (still do) and hope you do, too.

Find a New Neuropsych Step #1: Record the issues I’m currently having

The pieces are all there. We just have to put them in their places.
First, I need to collect the pieces.

Step #1 in finding a new neuropsychologist is : Record the issues I’m currently having and how they impact my life. Wherever possible, have real data behind my rationale for seeking help.

So, if I’m going to work with a new neuropsychologist, I need to be able to tell them why I need help. That means tracking the issues I’m facing on a regular basis, and figuring out if they are significant enough to warrant getting help.

In my case, there are certain things I would like to address, because they directly impact my personal and private life on a regular basis.

At the top of the list is the processing speed that seems to be getting slower.

Next, is my increasing difficulty with comprehending what’s being written (in emails and notes) and said to me. I am having a lot of trouble taking it all in the way I used to.

And then there’s the trouble I’ve been having with increased distractability and getting much more scattered than before. As is often the case with new jobs, about four months in, I start to lose focus, get scattered, and I lose ground. I had a very foggy/fuzzy couple of months behind me, which is patently clear as I attempt to piece together my end-of-year self-assessment for work. I am having trouble putting it all together — much moreso than three months ago.

I’m also having trouble getting started with things. This has been an ongoing issue with me, and I’ve tried to get help for it, but I’ve consistently been told (in so many words), “Your test scores don’t indicate difficulties with that part of your brain, so it really is a willpower thing.” I dunno. I really want to get started on things, but I sometimes have trouble figuring out how to get started — so I don’t. It’s becoming more and more of a problem, and I can’t seem to get help with it.

I’ve been organizing my study, and I came across an old performance review from two jobs back. My boss back then (about 4 years ago) warned that I was late finishing my projects, and that was tarnishing my otherwise stellar reputation. My performance review was also acceptable, rather than exceptional (which it should have been).

Part of that was the fact that my boss really didn’t like me and was threatened by me.  Part of it was that lateness and never finishing anything on time was a pretty big issue — which affected my performance, as well as my income. So, even if I did feel better about myself and my abilities to deal with life (as my neuropsych noted), the fact of the matter was, I simply wasn’t delivering on time.

Feeling good is great. Delivering on time is even better. In fact, I would have settled for being unhappy but more productive. That would have made a big difference for me professionally. Ultimately it would have reduced stress… and contributed to my happiness.

Anyway, these are some of the specific things I need to address on a neurological level. I need to know how the brain works with these things, and I need to understand how to tweak my performance – what, if anything, can I do to improve in these areas?

I need to map out exactly how these issues are getting in the way, list the things I have been doing on my own to address them, and talk about the results I’m getting (or not getting) that are affecting my performance at work and at home. I would feel a whole lot better, if I could take some positive steps toward fixing these issues.

  • Processing speed
  • Comprehension issues
  • Distractability
  • Getting Started / Initiation

If I can find someone to help me “hack” these problems, that would be great. It would be a step in the right direction.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

How to find a neuropsychologist – a step-by-step plan

question-brain
What’s going on in there? And how can I help it all work better?

This is the start of a step-by-step description of how I am finding a new neuropsychologist. My current one is retiring and moving away, so I need to find someone new who can help me – preferably in ways that my current neuropsych (who I have been working with since 2008-2009) has not been able to.

We all have our strengths and our weaknesses, and The Good Doctor is the same as anyone else. In the ways they have helped me, they’ve done a stellar job. In other ways, they have not helped me at all, and in fact, I feel as though I’ve lost ground, in part due to their influence and unwillingness to address issues I’ve raised.

When I first came to them, I was very unclear about many, many things. I was also struggling terribly with communication and being able to hold a two-way conversation. I had a lot of old ideas that I’d picked up from others, which were really holding me back. Heaven knows, I had plenty of chances to be on the business end of society’s proverbial cattle prod, and it didn’t help my self-esteem. I also was burdened by a tremendous overload of stress hormones and bad habits I’d picked up from years of using stress to keep my brain feeling awake.

There have been specific physiological/logistical reasons for my “behavior choices” which I never fully realized till I started working with The Good Doctor. And in many ways, my progress has really been fueled by my own willingness to question their judgment (later, after I left, as my brain doesn’t seem to work fast enough to piece arguments together while I’m in their office). It sometimes takes me days  to realize that I think they’re really full of crap, but then I figure out why I think that, and a real & valid solution comes to mind, to replace their cockamamie suggestions.

I won’t get into all my gripes here – suffice it to say, I now know a heckuvalot more about how to choose a neuropsych, than I did back in 2008, when I was searching high and low for help.

And I’m in a much better frame of mind — and I have the proper skills — to go looking for someone who can help me “hack” my brain, understand the places where it comes up short, figure out strategies for addressing those issues — and also figure out where I’m strongest, and how I can really pump up the goodness that comes out of that.

Here are the steps I’m following, to find myself a new neuropsych:

  1. Record the issues I’m currently having and how they impact my life. Wherever possible, have real data behind my rationale for seeking help. (Click to read more)
  2. Be clear about what I want to achieve from working with someone. Make up a short-list of my issues — a condensed version which will communicate to the neuropsych the nature and extent of my issues.
  3. Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.
  4. Put together a list of questions I have for potential candidates, finding out about their background, their successes (and failures), and their philosophy on recovery.
  5. Figure out what kind of schedule will work for me, based on my commitments and energy level.
  6. Set up appointments to talk to my short-list of candidates, and see who I like. Find out the answers to the questions from Step #4 above. Make notes on my impressions — before, during, and after.
  7. Discuss my notes with my spouse (or someone else whose judgment I trust), to see what they think.
  8. Sleep on it. Pick one. Go see them.
  9. Be clear about what my expectations are, what kind of timeframe I’m looking at to work with them (will it be related to a length of time, or a specific issue I’m having issues with?), and what their expectations are, as well.
  10. Commence the continuation of my rehab.

This seems like a decent list.

And with this in mind, I need to get out my TBI symptoms tracking worksheet (Download the Daily Experiences Journal (Wide) – Word Document here), and start using it again, so I can have a better idea of where I am, relative to where I’d like to be, both now and in the future. I may even modify the sheet that I have to focus on the issues that are most pressing for me (rather than being a laundry list of all 84 ways TBI makes my life miserable.

Back in 2008, I was tracking my symptoms on a daily basis — and I collected a lot of data. But it was too much. Now I know that I need to stick with the main things and identify actual patterns in my symptoms, so I don’t overwhelm my docs with all that information. They’re on information overload, as it is.

I don’t want to be cruel😉 To them, or to myself.

So, off I go to print my daily tracker — and update it to have only the issues that are bothering me right now, in ways that I’d like to fix.

After that, I’ll take my long walk down the road, to see what I can see, get the blood pumping, and then for my nap.

Onward!

Great list of #concussion resources

Right Relevance has a great list of concussion / tbi resources at http://www.rightrelevance.com/search/influencers?query=concussion&taccount=concussionsrr&time=1451316933.24 – you need to login to see the whole “batch”, but it’s well worth it!