Unless we understand #TBI / #Concussion, we can’t really treat it

I’ve been more absent from this blog, this month, than I’d intended. Life… you know? It’s been very busy at work, and things are shifting with my role. I’ve had some additional training and workshops, and I’m still trying to figure out where I fit in.

Fortunately, I have help. There are a lot of folks at work who are eager to step in and pull people up to the level they need to be at. I’m not the only one who’s having some challenges navigating the new organizational structure, but fortunately, the expectation is that each and every one of us is going to have challenges and struggle somewhat.

So, that’s helpful, overall.

Getting support at work frees me up to get back to my mission: To write about long-term recovery from concussion / mild traumatic brain injury, and show that it is possible to restore your life after you’ve sustained a brain injury. There is a real dearth of information about this out in the world, and I’m (still) on a mission to do something about that.

I realize that all my … “gyrations” at work have distracted me from this mission. It’s been siphoning off all my energy and distracting me, which is the opposite of what I want and need. So, I’m settling down in my job, chilling out, and looking to my long-term future… 10… 15… 20… 30 years in the future.

And that frees me up to concentrate on the here-and-now with greater focus. It lets me get back to my mission.

The other day, while researching a post, I came across this article:

New Advice to Move More After a Concussion

When young athletes sustain concussions, they are typically told to rest until all symptoms disappear. That means no physical activity, reading, screen time or friends, and little light exposure, for multiple days and, in severe cases, weeks.

Restricting all forms of activity after a concussion is known as “cocooning.” But now new guidelines, written by an international panel of concussion experts and published this month in The British Journal of Sports Medicine, question that practice. Instead of cocooning, the new guidelines suggest that most young athletes should be encouraged to start being physically active within a day or two after the injury.

“The brain benefits from movement and exercise, including after a concussion,” says Dr. John Leddy, a professor of orthopedics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, and one of the co-authors of the new guidelines.

And it makes sense to me. Because when you think about concussion / TBI in terms of what it is (an injury that disrupts connections and releases a bunch of “gunk” into the brain that shouldn’t be there), and you think about the brain in terms of what it does (processes information based on connections and makes new connections where none existed before), and you think about how the body works (moves all of that information through  – mentally and physically), then cocooning probably isn’t the thing to do for long periods of time.

TBI is a tricky thing. It’s different for everyone, of course, and something that works for one person might not work for another. But we’re all walking around in human bodies, and those human bodies function pretty much the same way.

So, if we use the principles of how the body and brain work, and we understand the nature of concussion, and we understand the dynamics of the whole scenario, new treatment approaches become clearer.

It surprises me a little bit that it took till May, 2017, to figure out how to better treat concussions. Then again, until the past 10-15 years or so, people didn’t really take “mild” traumatic brain injury that seriously. Everybody just laughed it off like it was no big deal.

Then we started to realize that onetime football players were ending up in a bad way — worse than the general public. And football players and their families started going public about their struggles. And people started talking — out loud — about stuff that used to be a source of terrible shame and embarrassment. The kinds of stuff that “you just didn’t talk about”, back in the day.

A lot has changed, thanks to research and increased awareness.

And we’re making progress in many areas.

But still, it surprises me, how much we don’t know… how much we still overlook… and how many people continue to struggle, months and years after a concussion or mTBI.

I have my own struggles, sure. A lot of the problems I had haven’t gone away completely. But after all these years of actively working on solutions, I’m doing a whole lot better at managing them, and that’s made all the difference. Maybe it’s true that brain injury can never be reversed, but then, life can never be reversed, and if we treat concussion issues as just another aspect of life that needs to be taken seriously and managed appropriately, it is very possible to have a “regular” life afterwards.

Sure, you’ll have to change some things. You’ll have to adjust. But life is full of those kinds of requirements. We don’t get a “pass” when we get injured, and the world jumps in to protect us. We just get a different set of challenges and difficulties and benefits to work with.

That being said, mental rigidity is probably one of the biggest hurdles to TBI recovery. The very black-and-white thinking that takes over when your brain gets injured can cause the injury to become even worse. Because you’re locked in a straitjacket of limited thinking. Getting your mindset out of the box and trying different things, living differently, getting on with your life, and being mindful about stuff… that can help hugely. I know it helped me more than I can say.

So, there are just a few more days left in Brain Injury Awareness Month. I’ve fallen far short of my stated plan to focus on brain injury recovery for the duration. I had such great plans… But of course… life. And my limits.

Turns out, what I’m taking away from Brain Injury Awareness Month is a reminder of how — yet again — I need to adjust my commitments and expectations and go a bit easier on myself. The thing to remember is that life goes on. And while I didn’t live up to my own expectations, the world keeps turning, the sun rises and sets, it snows and the snow melts, and the songbirds return to my bird feeder.

For today, that’s enough. It’s more than enough.

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I am a shitty healthcare consumer

BE AFRAID! BE VERY AFRAID!
BE AFRAID! BE VERY AFRAID!

Thinking about finding new doctors — a PCP and a neuropsychologist — I am dreading one thing in particular:

The expectation that I’ll be a “good consumer of healthcare services”.

Augh! Nothing sends me over the edge like that “consumer” label, when it comes to healthcare — especially brain injury recovery. It makes me NUTS.

Here’s why:

The label “client” boils us down to a set of behaviors or “consumer choices”, rather than living, breathing, vulnerable human beings in need of assistance in both subtle and obvious ways.

The label “provider” makes the doctor/neuropsych seem like an impersonal automaton who’s just going through the motions of providing a thing — like a vending machine delivering the bag of chips from the cubby you chose, or a fast food employee asking if you want fries with your order.

The client/provider terminology reduces the whole relationship to a series of transactions, which is really what they are in insurance company terms. And that sucks all the life and humanity out of it. Instead of being living, breathing people who show up in need of assistance, we’re male/female objects of study who are assigned whatever coded solution the provider deems necessary.

Calling us “clients” also completely misses the fundamental hallmark(s) of brain injury in a number of ways. As a reader commented on a recent post, we don’t have the choice about whether or not we need treatment. It’s not like you wake up one day and realize your shoe has a hole in the bottom, so you go out to your favorite store and pick up a new pair… or you think a certain outfit makes you look fat, so drive to the mall to find more flattering clothes.

With a brain injury, you may not even realize that you suddenly have needs — or if you do realize that, you may not understand what it all means — or you may not have the capacity to reach out and find help — or you may not have the means to get the help you find.

Using the client paradigm for brain injury survivors is wrong — and stupid — in so many ways. It’s also cruel and perpetuates suffering in countless ways that directly violate the Hippocratic Oath that every doctor must swear to. They actually promise “I will utterly reject harm and mischief” — but the client concept just perpetuates harm and mischief without end. Okay, so mental healthcare people, including neuropsychologists, don’t have to swear to the oath, but even so — wouldn’t it make sense to at least have an interest in rejecting harm and mischief?

From the comment:

I can still hear the founder of the National Head Injury Foundation (NHIF) (whose daughter has a brain injury) when a group of advocates with brain injuries were discussing how demeaning and offensive the word “client” was at NHIF annual meeting in 1988. She was defending her position by giving us examples of her being a client of hair dresser and her insurance agent. She said she had the ability to go to another hair dresser or insurance agent if she didn’t like how she was being treated. “I’m a client of theirs, but I have the power because I can go to someone else with my business”.

Hahahahahahaha… Sigh.

“Client choice” implies the capacity to A) identify what you need, B) see that you are/are not getting your needs met, C) go somewhere else.

A) You have a brain injury (hello!) – how the hell are you supposed to be able to identify what you need? You are often blind to your own deficits AND you can come up with all sorts of imagined deficits which aren’t actually there.

B) Your brain injury can prevent you from determining whether or not your needs are being met, because of damage to assessment and decision-making functions in the brain. Even the most poorly educated brain injury professional would know that. It comes with the territory. If you can’t determine what your needs really are, how in heaven’s name are you supposed to tell if those needs are being met. As an aside, I was convinced for years that my neuropsych, while helpful in many ways, wasn’t really helping me with my main problems. But guess what? They were. I just didn’t realize it for, oh, about five years. That’s way longer than most people have access to, or continue with, brain injury rehab.

C) Thanks to the Swissy-cheesy medical system, with is chock full of hacks, under-educated docs, aggressive/defensive insurance companies, and hurdles that are well nigh impossible for completely functional people to navigate, the chances of us being able to shop around for better help are slim to none. In rural areas (as in, most of the USA), you take your life in your hands, when you choose a doctor. Even in urban areas, it’s hit and miss. I’m going through this right now, with replacing my two docs — I feel like I really got lucky finding the two I’m losing. How am I supposed to repeat that luck? I have maybe two good thinking/functioning hours a day, thanks to fatigue and overwhelm, and no offices are open at the time when I’m at my best. The rest of the day, when I’m working and living my life, my bandwidth is severely limited (though I do a great impression of a functional average person). I simply don’t have the leisure of scouting around and going through an extensive screening process. And even if I did, I have no confidence that I’d be able to find reliable help in a timely manner — or that I’d even choose well.

Even after 10 years of recovery and being more functional that I’ve ever been, I feel like I’m basically screwed. After all this time, and with all my new tools, I still have no faith in 1) myself and my abilities to successfully navigate a complex and hostile system, or 2) the medical establishment which protects sub-par doctors under a veil of professional courtesy and allows terrible (and dangerous) doctors to “practice” medicine on patients who basically amount to science experiments.

I am the epitome of a terrible healthcare consumer. I’m an awful client. I question doctors’ authority. I challenge their ignorance. I bring pen and paper with me to write things down, and I type up my issues to give to them, when I arrive. I research my own conditions, I get to know my own “ecosystem”. I don’t sit back and let the doctors do all the driving. And I’m non-compliant, because some of the things they tell me are lazy… or uninformed… or overtly hostile… or deny my right to personal autonomy.

I don’t believe in roles-based medicine. I don’t believe in much roles-based anything. People who have to fall back on some template of behavior are instantly suspect to me, and people who spout jargon without even thinking about what it means, are on my shitlist. If you have to have your behavior defined by someone else, I’m not interested in working with you, because you are dangerous.

Of course, I will if I have to. I may have no choice, because contrary to the idea of us being “clients”, the selection of decent doctors who have a clue about my condition is sparse, scant, and the majority of them are booked up. Or they don’t take my insurance. I’ve had to make do with shitty doctors for years, and the prospect of having to go back to that again, doesn’t brighten my day. It’s almost like the whole system is designed to fail us.

Seriously, it’s like the insurance companies and the medical establishment want us all to just die off — after they’ve collected our premiums, of course. It’s much cheaper for us to die. And a lot less trouble for them.

Treating brain injury survivors as clients or consumers of a medical product system is a great way to ensure that the people who wish us ill, actually get their wish. It’s also is a very stupid way to look at things, and no right-minded individual who actually understands — or genuinely cares about — the impact of brain injury on person’s ability to assess, evaluate, and choose, is going to adopt or repeat that nonsense.

The problem is, it keeps happening.

Oh, screw it. I’m going for a long walk in the woods.

Gearing up for another neuro visit

Well, I found a new neurologist. And I finally got an appointment with them in about 4 weeks’ time. I’ll be sitting down with my neuropsychologist to review their notes.

This makes me nervous. Looking at what’s been going on with me, and trying to articulate it with another person is… challenging. I worry that I won’t articulate things well, and we’ll end up going off on a tangent that’s just not consistent with where I’m at.

And then I can end up on yet another boondoggle.

No thank you. I’ve done that already — several times, over the years, and I have better things to do than try out new meds that make me feel worse (or just plain weird).

I guess the secret is in keeping things simple. Focusing on a few simple questions — like  Is this sh*t going to kill me? — will keep things from spinning wildly out of control.

Also, staying rested and well-fed… not eating too much sugar… tracking my headaches when they come up. It’s all part of it.

I’m really more anxious than I am fearful. It’s just a lot of ideas and nervousness spinning around in my head. And things are very busy and chaotic at work, so that doesn’t help.

Oh, well. Time to go back to my experiments with numbers…

The biggest barrier to progress, is being convinced that you KNOW

Imagine what’s possible, when you just let it go — and grow

Okay, so here’s my question of the day:

In the land of mindfulness-oriented behavioral health providers, how is it that the concept of Beginner’s Mind gets lost?

I’m specifically talking about my own experience with behavioral health folks, including friends who are psychotherapists, counselors I’ve seen, as well as my neuropsychologist. In all my years of seeking out help for my issues, I have but rarely encountered individuals who were really able to suspend judgment and not get stuck in the trap of continually seeking out ways to reconfirm their own world views.

And how many times have I sat across from someone who was professionally trained to help me, watching them not listen to me for what I was saying, rather for confirmation of what they believed…?

I think it’s wonderful that there are professional tracks for people to go down, to learn how to help others. At the same time, though, people also need to not get stuck in thinking they have it all figured out.

Because the behavioral health landscape is changing dramatically, especially compared to where it was just 10 years ago. We know so much more about the brain and its mechanisms than ever before. Yet we have just only begun to scratch the surface. So, let’s not get all hoity-toity about how much we know and how clued-in we are, thanks to our specialized skills and whatnot.

To me, orthodoxy (being convinced that you’ve got THE SECRET to how things work) and rigidity (never, ever changing your world view) are even worse liabilities than a brain injury. They make it extremely hard to adapt — which is precisely what we need to do as TBI / concussion survivors. We may be changing and growing and whatnot, while our providers are still stuck in their own versions of reality — which may or may not be useful to us.

It really is a problem. But I’m not the one to run around telling people that they’re too stuck in their ways. They have to see and realize it for themselves, and let go of their pride, arrogance, hubris. I’m sure it can be very, very difficult, dealing with brain-injured folks and their families/loved-ones, not to mention the healthcare system. It can put you into a state of perpetual fight-flight, which makes you even more susceptible to egotistical tendencies, arrogance, and prideful blindness.

I think especially for those folks who have been on the leading edge for many years, who were ridiculed and marginalized and made to feel “less than” because of their forward-looking stance. When you’re continually attacked and thwarted, it can do a number on you. I know how that is, and it’s no fun.

So, that cannot help but affect you. It cannot help but color your world view and make you biochemically and neurologically inclined to behave in ways that are defensive and self-supporting. Especially if you’ve had to shore up your own self-confidence and self-image and professional reputation, lo these many years, that can train you to be a certain way… a way which is intent on finding proof that you’re right, that you were right all along, and “they” were all wrong to doubt and thwart you.

Yes, I get how that shapes and conditions you.

At the same time, the higher purpose (of being of genuine help to others) needs to trump the hunger of your ego.

In the end, isn’t it more fulfilling to continue to learn and grow, rather than being someone  whose main purpose is to ease the pain of the daily stresses of life and prove their “rightness” to themself and others?

I’m not a behavioral health provider, but personally I think I’d rather be learning and growing than constantly being on the defensive about my own convictions.

In the end, it can much more interesting to find out you’re wrong… and expand your concept of what’s right. There is so much more to discover about the human systems, the brain, and how they all interact.

I hope I’m not alone in this.

Doctors: They’re just so far away from us

It’s hard for me to know what to say to doctors, and how to say it

In preparation for seeing a new neurologist in the beginning of next year, I’ve been listening to some physician podcasts, lately. It’s my latest “thing” I do when I have some free time to listen. I need to better understand doctors and how they think and talk, so that I’ll be better able to communicate with them, if I end up seeing them.

The podcasts are usually pretty short and I can get at least 20 minutes in, during lunch or while I’m doing busy work at the office.

I don’t really have that much time to listen to podcasts or watch videos, in general, because it seems to take me longer to “get” what’s going on, than I expect. And it’s a little discouraging to listen and expect myself to understand immediately, but have to either back up and listen again, or just let it go.

I think it’s harder when I can’t see someone talking. Watching videos, it is easier for me to get things. But again, it takes up a lot of time, and it’s a bit discouraging to feel like I’m falling behind.

Anyway, today is my last full day of work before my Christmas and New Year’s vacation. I’ve got a few things planned for next week… but not much. Most of what I’m doing is taking care of myself with my support group — seeing different folks who can help me in one way or another — and resting. And doing some work on the projects I have going. This is going to be a good time to get away from my routine that has me on-the-go all the time, and do some deeper thinking than usual.

Should be good.

One thing I’m going to be working on, is collecting my info for this new neurologist I’ll be seeing. I’ve been intending to see a neuro for about a year, now, and finally it looks like I’m going to connect with one. I have high hopes about this… but I don’t want to get myself too caught up in hopes. I’ve had things go wrong before, so I have to factor that possibility in.

Anyway, it will be good for me to just collect all this info, anyway, so I have it to talk to any and all of my doctors later on. I haven’t really discussed my headaches in-depth with my PCP — they told me to go see a neurologist, anyway.  It will be good for me to collect my info in one place… also for myself.

I tend to just disregard what’s going on with me, because there is so much going on, on a given day. And I’m kind of resigned to it all — the vertigo, dizziness, feeling sick to my stomach, always having a headache, the ringing in my ears, the noise and light sensitivity, the joint and muscle pain… it’s all one continuous “cloud” of background noise for me, and I just live my life in spite of it. I don’t let it stop me. It slows me down at times, but it doesn’t stop me. And I use it as a barometer to make sure I’m not overdoing it. More pain, more noise… that means I’m overdoing it and I need to rest. So, it can come in handy.

But some days, it just feels like too much, and I’m not all that sad about the idea of not living forever. “Eternal rest” sounds pretty friggin’ good to me, some days. Not that I want to kill myself (I haven’t felt that way in a few years, which is a positive development). But I don’t mind the idea of this whole “deal” not going on forever.

Other days, I manage to deal with it… and I have hopes for things changing for the better.

If only I felt like I could effectively discuss this all with a doctor. I really don’t.

Talking to doctors has never been my strong suit. Conveying the right information in the right manner has always been a challenge for me — I either gave them too much information, or not enough. Either way, I often end up looking a bit dense and malingering, like there’s not really anything wrong, so what the hell am I taking up their time for? Listening to the physician podcasts, I’m struck by how specialized their language is, and how differently they describe and conceptualize things. They have their own language, and with their own language, comes a different way of thinking about things — very, very different from how the rest of us think and deal with things.

Going to the doctor is like going to a different planet, sometimes. It’s a foreign place that often doesn’t seem to have anything to do with my everyday life. Doctors are often so removed from the flow of regular everyday life, with their entire systems being reshaped by medical school, their thought processes shaped by specialized terminologies and ways of looking at situations, and their social status being separate and apart from “the sick”.

They deal with extreme cases all the time, so of course they have to protect themselves. They’re human, just like us, and the medical school system seems to crank out professionals who are doctors first, and humans second. And if they never have any physical problems of their own… well, how can they really truly understand the situations of the people they’re working with?

It’s very odd. And it’s also perfectly understandable.

But even though I understand it, it still bothers me. Yes, I get how the stresses and strains and secondary trauma of medical training produces individuals who are pretty far removed from their patients, in terms of thought process, language, and deep understanding of the human condition, but it’s still pretty depressing. And I get very anxious when I think about trying to explain myself to the next neuro I see — if that ever materializes at all.

Who knows if it will? But whatever happens, I still need to track my symptoms and keep decent notes, so that if it ever happens, I’ll have something useful to convey.

Well, anyway, gotta get to work. The day is waiting.

Onward.

 

 

St. Barbara of Arrowsmith-Young

Thanks for the help this past Sunday

So, on Sunday I spent the afternoon reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain”, about how she learned how to identify the underlying issues beneath her severe learning disabilities, which had made her life a living hell for 26 years of her life. I found the book for free on Scribd.com — my new favorite place of all time. You can read the book for free here: https://www.scribd.com/book/224350322/The-Woman-Who-Changed-Her-Brain-And-Other-Inspiring-Stories-of-Pioneering-Brain-Transformation – you just need a free login.

Anyway, I am finding a lot of similarities between her situation and mine, despite obvious differences. And it occurs to me that after hearing a number of accounts of her hitting her head (running into things, banging her head before she started to study, etc.) TBI might just factor into her account. She focuses on the learning disabilities parts, rather than the root cause, so that makes the book more accessible for folks who have had any kind of difficulty with learning and understanding and communicating — me included.

One section in particular jumped out at me yesterday:

I recall a twelve-year-old student with average intelligence but whose severe weaknesses in both the left and right prefrontal cortexes left her as compliant as a young child — so compliant that other children would toy with her and order her to stand and sit on command or to stay in the schoolyard long after recess was over or to surrender her Nintendo game. Her neurological weaknesses had robber her of her ability to evaluate a command and decide whether it should be obeyed. She addressed her problem areas and eventually was able to say no.

That’s pretty much me — but in very different kinds of situations. I didn’t have a problem with being compliant and going along with others as a kid. If anything, I was defiant and went against what anyone and everyone told me to do (except for my love interests — they could always boss me around).

The compliance and obedience and lack of questioning happened in adulthood. And I wonder if the three car accidents, the fall off the back of the truck, and the occasional head-banging — all in my early adulthood — might have affected my prefrontal cortexes to the point where I would just compliantly do whatever my spouse told me to do.

If that’s the case — and my compliance has been neurological, rather than emotional or character-based — then that’s a huge relief. And it means I can do something about it. For close to 20 years, I pretty much went along with whatever my spouse told me to do. It wasn’t so pronounced in the beginning, but then it got worse.

I had a car accident in 1997 where I was rear-ended, and I couldn’t read for several days. The letters swam on the page, and I couldn’t concentrate on anything. I recall feeling weird and shaky and being a bit “off” for some time after the car accident, and I wonder if maybe that affected my prefrontal cortexes and made me more compliant. People around me thought my spouse was bullying me, that they were being abusive and domineering, but honestly, I just went along… because it was the only thing that seemed useful to me.

I need to check around to find out more.

Anyway, that’s just one part of the book that I’m really enjoying. There are a number of different places where I recognize myself — the hesitance, the inability to get things done, the self-regulation problems… I’m not sure I want to think about them in terms of learning disabilities, but rather brain capabilities. And they apply to all kinds of situations, not just educational ones. That’s something that the author talks about a lot — how addressing these learning disabilities will improve functioning in the rest of life.

What Barbara Arrowsmith-Young has done is remarkable. She’s really figured it out — and from the inside, not from the outside. It’s amazing. I’m a huge fan, and if I were religious, I’d recommend her for sainthood. Her story is one of the reasons I got myself into neuropsych rehab, in the first place — when I read Norman Doidge’s “The Brain That Changes Itself” her story stood out for me more than any others. Because she took it on herself, and she did the work, instead of having someone else do it for her. And now she’s passing it on to others. She does public lectures. She has her Arrowsmith School. She’s written a book.

Unfortunately for me (and probably many others), the Arrowsmith School is expensive. And it’s in Canada, which is not an impossible distance from me, but still… I have to go to my job each day, I don’t have a lot of money to spend, and I’m thinking there must be another way to get this kind of help without being locked into a specific location, or paying someone to get me on track.

Again, I come back to living my life as the best recovery. Living fully and reflectively. Mindfully. Engaged. All those catchwords that basically say,

Do the best you can each and every day…

Be honest with yourself about what’s going on…

Learn from books and movies and the world around you, your experiences, your teachers and your mistakes…

Change what you can so you do better next time…

And share what you learn with others.

Absent the resources to enroll in the Arrowsmith School for months (if not years), and with the help from a handful of competent professionals, I seem to be making decent progress.

Speaking of which, I’ve got some chores to do.

Onward.

Amiss, but getting better

On second (or third) thought… no thanks

I’m scrapping the idea of going to the ER today. I stretched and moved yesterday, and I took a real break — spent the afternoon napping, reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain” (more on that later), and just puttering around the house, taking it easy. I’m going to mention the left-side weakness to my counselor, just so someone else knows about it. And I’m probably going to check in with my neuropsych on Wednesday. I do feel better, after taking some time off, and now the idea of embarking on a medical adventure doesn’t seem like a good use of energy.

Oh. My. God. When I think about having to explain my situation to doctors all over again… Yeah, no thanks.

So, a big shout-out to those of you who talked me back from that edge. I owe you.

It’s Monday. Only two more days in the office 20 miles from home. Then I move to the office 5 miles from home. It’s exciting. Also, I’m barrelling down the road towards a couple of big-big deadlines this week. That makes things easier.

It’s interesting — I’m gradually getting the hang of living by deadlines and holding people to them. In past situations I’ve worked in, there were two kinds of situations. Either

  1. The deadlines were fluid and there wasn’t a hard-and-fast rule about when things got done, and in what order. People were sort of lackadaisical about doing their jobs, and if it got done, then woo hoo. But if it didn’t get done, oh well.    Or
  2. Deadlines were in place, but everybody was a top-notch over-achiever who would have sooner cut off their left hand, than not do their job.

Now, everything is about the deadlines… but I don’t have a top-notch gang of over-achievers available to me, to get the job done. I have maybe one or two, who are usually overworked.

Sigh.

Well, it’s all very educational. Now I get to learn how to motivate people who have no real reason to be motivated at all. They don’t report directly to me, they aren’t all that thrilled about their jobs, and the burning desire to excel doesn’t seem to light up their days and nights.

Interesting.

So, now I get to learn how to make it all happen. And in the end, that’s going to be a valuable skill. I just have to acquire it.

I’ve got some more work to do on restoring a sense of self after TBI. I’m also restoring a sense of my own self — as much by slogging through the tough times, as experiencing the good times.

In a way, slogging through the tough times is even more useful to me than having everything go well. It shows me that I can do this thing, called adapting and overcoming. And it teaches me valuable skills along the way. I am extremely rigid and uncompromising in some ways, which can come in handy, when it has to do with personal integrity and delivering on my promises. When things come up to oppose my grand plans — as they invariably do — I can either buckle and fall to pieces (that sometimes happens), or I can learn from it and add to my overall knowledge and skill in handling those types of situations.

I choose the latter. And instead of tearing myself down — e.g., beating myself up for going off the deep end yesterday with the sensations I’m having on my left side — I can learn from the experience, chalk it up to, well, being human, and move on with a little more information under my belt.

And when I focus on learning and growing from experience, that builds up my feeling about who I am and how I handle myself.  Getting bogged down in despair and frustration is not how I want to be. It’s now how I understand myself to be. So, I have to find a better way. And recognize my limits — my tendency to go all catastrophic on things that happen with me — so I can keep them from taking over my life. I have limits, just like anyone else, and they are part of me — but only a PART of me, not all of me.

Having a broader sense of myself as a collection of many features and qualities, as well as a lot of strengths along with my weaknesses, makes all the difference in the world. I can’t gloss over the tricky parts, but I sure as hell can emphasize the cool stuff, and make the most of that.

Speaking of making the most of things, I need to really focus on getting into my day. It is SO HARD to get going for work, this morning. Mondays have been very difficult for me, lately. Transitioning into work and really getting invested, has been a monumental task. I dread everything about it, and I can’t seem to get into the day, no matter what I do. I know why, though. It’s old patterns from many years of bad experiences that are cropping up again, just at this point in time. Four months into just about every endeavor, this happens with me. Like clockwork. More on that later.

Anyway, the day is waiting, and I have a lot to get done today. Things are looking up, and that’s a good thing.

Onward.

The TBI/Concussion Energy Crisis – Part 2 of 2

This is Part 2 of a long post that I’ve split into two parts. The first part is here:

Running on empty?

Long-term outcomes after mild traumatic brain injury — and persistent post-concussion syndrome that doesn’t resolve in the usual couple of weeks — have baffled researchers and practitioners for a long time, but to me it makes perfect sense. There is a cumulative effect of stress and strain that comes over time. There’s plenty of research about the long-term effects of chronic stress. But there doesn’t seem to be a lot of research about the levels of stress among mild TBI and concussion survivors.

Everybody seems to think things just resolve. And they don’t seem to think it matters much, that we are no longer the people we once were. They don’t seem to realize what a profound and serious threat this is to our sense of who we are, and our understanding of our place in the world. At most, it’s treated like an inconvenience that we’ll just see our way through with time.

But it’s bigger than that. Losing your long-held sense of self when you’re a full-grown adult, with a full docket of responsibilities and a whole lot invested (both by yourself and by others) in your identity being stable, is a dire threat to your very existence. It is as threatening to your survival, as surviving an explosion, a flood, an earthquake, or some other catastrophe that nearly does you in.

It’s traumatic. But because it’s not over the top and in your face and dramatic — and it doesn’t register on most imaging or diagnostic equipment — people think it just doesn’t matter.

Or that it doesn’t exist.

Frankly, the professional community should know better — especially those who work with trauma. They, of all people, should know what trauma does to a person — in the short and long term. I suppose they do know. They just underestimate the level of stress that comes from losing your sense of self and having to rebuild — sometimes from scratch. I’m not even sure they realize it exists.

But they do exist. Dealing with the daily barrage of surprises about things not working the way they used to… it gets tiring. Trying to keep up, takes it out of you. I know in the course of my day, I have to readjust and re-approach many, many situations, because my first impulse is flat-out wrong. I have to be always on my toes, always paying close attention, always focused on what’s important. Always reminding myself what’s important. I have to perpetually check in with myself to see how I’m doing, where I’m at, what’s next, what I just did, how it fits with everything else I’m doing… Lord almighty, it takes a lot of energy.

What’s more, those stresses and strains are made even worse by being surrounded by people who don’t get how hard I’m working. I swear, they just have no clue — my spouse and my neuropsych included. They seem to think that this all comes easily to me, because I do a damned good job of smoothing things over and covering up the turmoil that’s going on inside of me. I have trained myself — through a combination of techniques — to at least appear to be calm in the midst of crisis. Even when things are falling apart around me and inside me, even when I am at my wits’ end and am about to lose it, I can (usually) maintain a calm demeanor and chill out everyone around me.

Heaven knows, I’ve had plenty of practice over the years. If I hadn’t learned to do this, I would probably be in prison right now.

No, not probably. I would be in prison. I like being free and un-incarcerated, so I’ve learned to hold my sh*t.

Which is where sleep and proper nutrition and exercise come in. Because after years of thinking that sharing my experience with the ones closest to me would enlist their help, I’ve realized that doing that will never ever achieve that goal. People just don’t get it. Even my neuropsych doesn’t get it. Everyone has this image of me as I present to them, which is totally different from what’s going on inside of me.They seem to make assumptions about how I am and what I am and what life is like for me, that have nothing to do with how things really are.

Inside, I have a ton of issues I have to manage each and every day. Today, it’s

  • confusion & disorganization
  • anxiety
  • irritability
  • neck, back and joint pain
  • noise sensitivity
  • dizziness
  • ringing in my ears that’s not only the high-pitched whine that never goes away, but is now accompanied by intermittent sounds like a tractor-trailer back-up alert beep. Nice, right?

And that’s just for starters. Who knows what will happen later today.

But I’ll stow the violins — the point is, I really can’t rely on others to figure things out for me — even the trained professionals. I can’t rely on them to understand or appreciate what my life is like from day to day. I need to rely on myself, to understand my own “state” and to manage that state on my own through nutrition, adequate exercise, rest… and to advocate for myself to get what I need.

I have to keep those needs simple — rest, nutrition, exercise — and not complicate matters. Getting more elaborate than that just works against me. It’s hard to explain to people, it gets all jumbled up in my head, and the other people try to solve problems they don’t understand, in the first place.

On the one hand, it can get pretty lonely. On the other hand, it’s incredibly freeing. Because I know best what’s going on with me, and I know I can figure out how to get that in place.

The bottom line is — after this very long post — TBI and concussion take a ton of energy to address. It’s not a simple matter of resting up till the extra potassium and glucose clear out of your brain. There are pathways to be rewired, and they don’t rewire themselves. Depending on the nature of your injury — and a diffuse axonal injury that frays a ton of different connections, even just slightly, can introduce a wide, wide array of frustrations and hurdles — you can end up spending a ton of time just retraining yourself to do the most basic things. Like getting ready for work and making yourself breakfast without missing any important steps (e.g., taking a shower or turning off the stove).

And when you’re trying to rewire your brain and retrain yourself to get back on track, at the same time you’re trying to maintain your life as it once was… well, that’s a recipe for a whole lot of hurt, if you don’t give yourself the energy stockpiles you need to move forward, and if you don’t take steps to regularly clear out the gunk that accumulates in your physical system, as a result of the stresses and strains of the rewiring process.

That being said, I wish that someone would do a study on the stress levels of concussion and other mild traumatic brain injury survivors. We need to collect this data, in order for professionals to better understand us and our situations, and to better know how to treat us.

For the time being, however, I’m not holding my breath. I know what works for me, with regard to my recovery — having someone non-judgmental to talk to about my daily experience, keeping records of my daily life so I can self-manage it, regular exercise, pacing myself, good nutrition, intermittent fasting, keeping away from junk food, adding more high-quality fats and oils to my diet, and getting ample sleep with naps thrown in for good measure.

Those are really the cornerstones of my recovery. When I do all of them on a regular basis, I get better. If I overlook any one of them, I slide back in my progress. It’s an ongoing process, for sure.

The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>

Getting my life back

There is more out there waiting…

So, the bulk of the Project From Hell is done, and the remaining pieces are mapped out to be completed in the coming weeks. So, that drama is behind me, more or less. I’m still exhausted — came home from work last night and crawled into bed to sleep for 3 hours… then had to go to bed after eating dinner, watching a movie and running out of steam. My exhaustion wasn’t just work-related. I also had a doctor’s appointment to follow up on some tests I had done over the past months.

Last spring/summer — about a year ago — I had some weird pain that wasn’t going away, so I visited my doctor and they ran some tests. They did some scanning and bloodwork, and they ruled out the cancer they thought had started up with me. The weekend I spent between being told “well it might be cancer”, having my blood taken and then getting results back the following Monday/Tuesday was probably the longest weekend I’ve had in a long time, and as a result of the existential crisis I plunged into, a lot of my outlook about life and work has shifted.

There’s nothing like lying awake in bed at all hours, staring at the ceiling, wondering if the life you’ve led has really been the kind of life you wanted to lead.

Of course, by the middle of the next week, my test results were back, and there was no sign of cancer, but still… Pondering that whole scenario — and wondering if it would even make sense for me to pursue mainstream treatment options at all — and wondering if maybe it would be better to not fight it but deal with it and check out with my own dignity intact (we’re all gonna die sometime, after all) — well, it changed a lot for me.

All of a sudden, I was keenly aware that I am in fact pushing 50, that life isn’t going to go on forever, and I have this one chance to do the things I feel I’m supposed to do… and what the f*ck am I doing?

All of a sudden, the chasing after this-that-and-the-other-thing made a lot less sense, and I decided to shift my attention away from climbing to the top of the corporate heap… and towards just being happy. All of a sudden, the track that I was on made a lot less sense and seemed like it just wasn’t delivering the goods I was looking for. All of a sudden, the things that really matter most to me — keeping this blog going, having a decent marriage, enjoying the house I’ve worked so hard for, and finding things that bring me actual bona-fide enjoyment — those things started to come front and center.

Of course, it didn’t bode well at work. I mean, people there are crazy. Seriously. They seem to use work as a drug to dull their pain — when they’re not drinking heavily or sleeping around or chasing some exotic high that makes them the envy of their professional peers. The Folks In Charge (FICs) are power-tripping yahoos who run around high-fiving each other like they’ve scoring a couple of overtime goals in a hotly contested, tied Olympic ice hockey game.

Dude – seriously? Your kids are the competitive athletes, not you.

Anyway, I guess the organizational changes have thrown middle management into a tizzy, because they’ve all behaving badly. And the worse they act, the more the pressure the folks in the trenches to PERFORM, the more they play their power games where only certain people get certain information, the less engaged I am, the less inclined to become engaged I am, and the more I look beyond the hallowed (and incredibly boring — would a little non-corporate, non-brand-specific artwork kill you?) halls of the WorkPlace for satisfaction and meaning.

Which is probably just as well. Because my devotion to my Work in the first year of my current job was not very balanced and probably not entirely sane. Ask my spouse; they can attest.

Anyway, back to the present…Yesterday, I had a doctor’s appointment to follow up on some testing that was done as a follow-up to last year. I was supposed to go in for testing, six months ago, but the job change threw me off, and I just didn’t go. I also didn’t feel like dealing with doctors and diagnostics and what-not — even if they were worried about me having something serious wrong with me. The change of commute was bad enough, and I figured that if I went in for testing before I was adjusted to the commute and my system had calmed down, they were going to see a bunch of weird spikes in my levels and readings that had more to do with my relatively normal system responding to unusual circumstances, instead of an unusual system operating in relatively normal circumstances.

So, I showed up at the doctor and met with the physicians’ assistant, who is capable and personable and has been more helpful to me than the doctor, proper. We had some good conversations, until we got into the testing talk and I got the lecture about not coming in earlier when they wanted me to, and they started talking about doing more testing. I did consent to getting some more imaging done, which was fine. But when we started talking about the more invasive procedures, I had to stand my ground and dig my heels in.

No way was I going to submit to what they wanted me to do. The last time I had it done, I felt like crap for days after. And I also started seeing articles about false positives and permanent cell damage from those sorts of diagnostics. And I told the PA that I’d done my research and if they wanted to know such-and-such about me, they were going to need to find another way to do it.

And the PA gives me a lecture about how they care for people who are seriously ill with what they would be screening me for, and they don’t have any other viable options available (at their facility), so that’s the best they can do. But it’s better than nothing. Or so they said.

I told them that there had to be a better way to screen for that sort of stuff, and I’d been doing some research and had found some new technologies that were looking promising — and I’d be going down that route, rather than helping their facility recoup their investment on that certain kind of imaging technology.

The PA could at least hear me. It wasn’t like I was afraid to have testing done. That’s not it at all. It’s the kind of testing that they use and make available. It’s the sub-human, degrading, painful, potentially health-damaging approach they take, all the while saying, “It’s not perfect, but it’s the best we have right now.” Bullsh*t. It’s the only set of technology eggs they’ve put in their diagnostic basket, and they’re going to push that “solution” until it finally pays for itself.

Please. As though the scientific research from nearly 100 years that has warned consistently about this certain type of diagnostics didn’t matter… and would in fact save me. Again. Please.

Again, at least the PA could understand where I was coming from, and they didn’t keep pushing me. But they gave me this long, sad look — like they expected me to come down with this condition, and they expected to see me back with them in a matter of years, as I slowly (or quickly) died from this dread disease.

Yeah, okay, whatever. I’ve heard too many stories about “deathly ill” patients outliving their doctors, to lose much sleep over it. Plus, my triglycerides are a whopping 44, my HDL (good) cholesterol is at 85 — way over the 40-60 desired range, and my LDL (bad) cholesterol is 84, which is in the middle of the desired 40-130 range. Overall, my cholesterol is 178, which pleases me. And aside from a couple of red flags about vitamin deficiencies which can be supplemented, my bloodwork looks like it belongs to someone half my age. So there. I’m sure folks will pardon me if I don’t panic 😉

It’s not like I am courting my own demise, but of all the things that can and may “get me”, cancer contracted from their diagnostics is not going to be it. I’m not losing any sleep over this, now that my bloodwork is back and looking good.

Quite the contrary — if anything, the exchange (on top of the past three weeks of unmitigated crunch-time) put me to sleep. I hate feeling like I have to fight with my healthcare provider to just answer basic questions, and it really took a lot out of me. It was all I could do, to keep focused the rest of the day and get my work done. My afternoon was slow and deliberate, then I drove home to crawl into bed and pass out for three hours.

So, now it’s Saturday. The work week is done, I have some chores to do, the weather is beautiful, and I am presented with a number of choices about what to do with myself. I need to get out of this house, for sure — I’ve been stewing in my work frustrations all morning, looking around at different opportunities online, and giving thought to what I’d like to do with myself. I’ve toyed with the idea of going out for a walk in the woods, but I’ve been so bent out of shape about my work situation, that I didn’t relish the thought of spending my time in the woods obsessing about my job, which I would have.

So, I’ve stayed inside and pondered what I want to do, as well as what I can do. I have a hefty mortgage to deal with, so I can’t just take any old thing. And like I’ve been saying, there are things that I’ve been doing for years and years that are no longer easy and enjoyable for me. So much has become a chore, so I’ve been spending some time thinking about what would make me really happy — what would get my life back.

I once worked with someone who believed that we are all working to earn/purchase our freedom. They believed that we come into the world beholden to the world around us, and we have to spend our lives earning our freedom. They did not believe that it came for free, but that it was a struggle for each and everyone of us to get free. Not everyone does, not everyone can. We all do it to the best of our ability and belief. But that was what they believed that we are doing on this earth.

I can’t say that I agree or disagree. I do see some logic to that outlook, and it has certainly seemed to be true for me.

Whatever the facts of the matter, the bottom line is that nobody but me can secure my own happiness and fulfillment. That is my responsibility, and I take it on willingly. Now, in that spirit, I’m going to get on with my day and get out in this beautiful weather. I may obsess over my job situation while I’m walking in the woods, or I may not. But I won’t know till I step out and go out to find out.