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.

Slogging through – some days (weeks) are like this

solitude-imageI don’t know why, but this week has been a hard one for me.

It seems to be taking forever.

And yet, I feel like it’s still Monday, with precious little getting done.

I’m tired. And when I’m tired, everything gets harder… and feels longer. I know that much.

I have been thinking a lot about the shift society needs to make in its thinking — and talking — about concussion and mild TBI. That’s taken a lot out of me.

Also, my spouse got test results back from the doctor, and the warning-sign numbers which should be going down, have been going up. They’ve got a couple of chronic health conditions that they need to manage closely, and they’ve really been slacking off over the past months. They also skipped a couple of blood draws, because they were anxious about doing it. So, for months they have not known that their numbers are high — which really does a number on their system.

Tomorrow they need to go back to the doctor (and take me with them) to discuss what to do.

I know what I’m going to do, in addition to sitting there and listening. I’m going to have a talk with the doctor directly to see if they can recommend that my spouse start seeing a neuropsychologist for help. My own neuropsych has helped me tremendously with my thought process, and they’ve strengthened my ability to think things through to an amazing extent.

I really think my spouse could benefit from this, as well. They have neurological issues, and they have never addressed them with a neuropsychological professional. Their neurologist is almost useless, other than for prescribing the meds they need.

The original neurologist missed identifying both of their strokes, and also said they were on the opposite side of the head than what they were (possibly from misreading the MRI). And after we questioned that first neurologist about a medication they prescribed because all the literature said it could mess with certain very important levels, they pitched a little hissy fit and tossed a bunch of medication writeups at me and told me to pick one myself, which I did. And it was a good choice. My spouse has been successfully on that med for nearly 10 years. Of course, having your patients pick their own medications raises some issues about medical care, but let’s not get into that right now.

This new neuro is only slightly better, telling us that the medication we rejected because of clearly documented dangers (in the literature, as well as clearly on the warning label), was perfectly fine. Their particular sort of narcissism presents as deep-seated insecurity and emotional neediness… where the original neuro’s narcissism was all about them being an unassailable expert who was, basically, a god (tho’ clearly they were not), who was inconvenienced by patients who interrupted their European vacation schedule.

Unfortunately, my spouse is so profoundly anxious about doctors, that they refuse to look further for another. Even though the current one is basically just a pill dispensing machine, and good for precious little else. I really believe my spouse’s issues have to do with poor executive functioning and short-term working memory problems. In additionto the strokes, they’ve had at least one CBI (Concussive Brain Injury or mild TBI) that I know of — they slipped on the ice and fell back on their head while getting the mail one day about 15 years ago, they were dazed and confused, and for months after that, all they did was yell at me and get freaked out over… everything.

So, their thought process is not great. Which just feeds their anxiety. I saw a mention of some research about how anxiety is tied to short-term working memory issues, the other day, but I can’t locate it now. Anyway, it’s clear to me from watching them for 25 years, that their attention and memory issues just feed their anxiety. And that causes them to make poor decisions. AND that leads to yet more problems. Including the erosion of their thought process. It’s a vicious cycle.

So, a neuropsych might possibly help, where meds and exhortations to “get it together” simply don’t work.

That’s more than I’ll be able to say tomorrow. I need to find a way to put it, so that the doctor can hear it. And I need to say it in front of my spouse, so they don’t think I’m plotting against them. They get a little paranoid. When I step back and look at my life and the way my spouse behaves, it just looks crazy. They look mentally ill. Which they are.

But they have other strengths. And they’re not like this all the time. It’s just when it’s extreme.

Then “the crazy” bubbles to the surface. And it’s not much fun, I can tell you that.

So, the main thing is for me to stay calm and cool and collected.

Which of course is a bit of a challenge, because my work situation is pretty uncertain, and I’m feeling the burn of being a 50+ individual contributor in an industry that favors 25-year-olds with mad skills in the latest technologies. I have experience and a level head. But I’m not in a position to sell myself cheap, so if a company can get two employees for the price of one, they’re usually going to do it.

Anyway, this might be moot, if my old employer (who was very sad to see me go and would love to have me back) has a spot open for me. Looking back, I realize now that they had a pretty awesome structure — since they’re based outside the USA, and they operate by European norms, where people are actually valued by the company rather than tossed aside like so much detritus, they have all sorts of safeguards in place to actually keep people in their jobs.

It’s a very different scene than high tech the States, where everything is so much in flux, and people aren’t people — they’re human resources, to be shuffled around, as it suits the folks in charge… and out, if it’s more profitable to do so.

Last week, I saw a bunch of news articles on the increase in mortality among middle-aged white folks. The authors were puzzling about why that’s so. If they have to puzzle, they aren’t paying attention. And they clearly don’t realize that America is a place where it’s easier to die after you turn 50, than it is to live.

It’s hard to not feel disposable in this society. It’s very hard, indeed.

But some good rest would help, I’m sure.

Finding new doctors this year

group-of-doctors
I just have to keep telling myself, They Want To Help.

I need to find a new PCP – soon. My doctor, who I really liked a lot, and who worked with me better than anyone else I’ve ever met, passed away last September. I am still on the books with the practice, and I was seen by the doc who runs the practice, who I do not like at all. When I was trying to get clearance for neuropsychological testing, I had to be seen by a neurologist, and the doc who runs the practice is the local “gatekeeper” for referrals.

My insurance at the time was terrible for mental health/neuro things, so I had to get special permission from my hospital system — and that gatekeeper tried to stop me from finding a specialist in a nearby city. They wanted me to stay within their provider network. It’s great requirement for the business side of the hospital system (they nearly went bankrupt, 10 years ago), but it is a terrible idea for patients who need specialized help that can be found quite easily at locations less than an hour away.

So, I’m not a fan of that doctor. I’m not sure if they realize how much I detest them — I didn’t let it show, when they gave me my annual physical last fall — but I hope I never need to explain that to them.

I just need to move on.

Additionally, I have to find a new neuropsychologist, as my current one is retiring in a few months. I’m pretty anxious about this, because I completely lucked out that I connected with them at all. They have offered to help me find someone new, but in the past, they’ve been pretty unreliable, and they’ve also  steered me towards people who just weren’t good matches for me.

So, I’ve got to start that process again. The last time I went through it, it was stressful and somewhat traumatic. Insulting. Humiliating. Depressing.

But that was over 8 years ago, when I was still in a pretty dense fog from my TBI in 2004. That’s changed. I’ve changed. I can do this… I have to keep reminding myself.

Because I sometimes forget.

Anyway, it’s turning out to be a decent day. Time to get out in it and have some fun!

Onward.

TBI recovery in mind and body

I had an interesting thing happen the other day. I got my test results back from my physical, and the doctor who sent them did not send the full numbers for my lab results. They actually just sent me a sheet that said whether I had passed or failed all of my markers.

This is so not helpful, I can’t even put it into words. I was depending on them to send me a full report with the full statistics and not have to spend a lot of time going through analysis of those numbers. I just needed the exact results. I didn’t need their commentary, and I didn’t need them to simplify things for me. I probably should have been more clear about my needs and my expectations, but this is the first time this has ever happened to me. I have never ever had a doctor just send me a pass/fail report on lab results.

No, correction, my last doctor, who has since died – rest their soul – actually did once send me a note in the mail that said all of my lab results looked good. That’s even worse. I don’t know which is worse, having somebody just dismiss my interest in the actual numbers and say “yeah you don’t need to know about this”, or having somebody do a half way analysis of my numbers – not in any larger context not in the space of anything extended, but just as a one-time look.

This is one of the problems that I have with doctors. That they control the information or they just assume that people do not have the intelligence or the proclivity to actually analyze our data and derive meaning from it.

The ironic thing is, their spouse works at the same major multinational company that I do, and much of our business revolves around data. So I work daily with people who are keenly interested in data, and so does their spouse, and yet somehow they don’t get that I would actually have an interest in the actual data that was pulled my body, on my time, using my insurance.

My data is mine. My body is mine. And I really do not appreciate having someone just tell me oh you don’t need to know about your body you don’t need to know about your data you don’t need to know about your health. This is one of the things that makes me crazy about modern medicine. it really is all about control of information and there are a lot of doctors out there these days who believe that their authority should be paramount and they hold on to information. I was talking to someone the other day I had said that in the 19 sixty’s doctor started to be trained to be more collaborative, rather than dictatorial. And since then they have not then so focused on being the ultimate authority and everything. Rather, they positions themselves as trusted experts in Healthcare.

Maybe that’s true, but my experience with doctors has not been that great over the years I’m part of that seems to be related to them still needing to be the authorities in the situation. They may want to be collaborative but there’s still insisting on being at the top of the food chain, when it comes to who decides what.

It’s hard to know sometimes what to make of all of this. I need to find a new doctor I know that. And I feel quite stymied and looking for another doctor. The big thing with me, is that it is about my health it is about my wellness it is about my ability to live my life as best I can, and it feels like doctors are getting in the way rather than helping me.

Actually, it’s the old healthcare paradigm that’s really getting in my way. Its the fact the medicine – formal medicine, which has been peer reviewed and approved and blessed by the powers on high – is so far behind where most of us needed to be these days. There is so much focus on risk mitigation. There is so much focus on avoiding lawsuits. and the practice of medicine Really suffers as a result.

Of course there are alternative therapies, and there is complementary medicine. But it is so hard to find anyone in the medical field who will willingly and easily collaborate with alternative complementary medicine. And it seems to me that in fact a lot of the animosity towards alternative and complementary medicine, such as going to see a healer of some kind, really misses the point about why people seek out that kind of care.

People seek out alternative care to get something that they cannot get from the medical establishment. And that something is actually care. It strikes me as ironic that the medical establishment refers to himself as healthcare when what they’re really doing, apparently for the most part, is disaster prevention or catching people up after something awful happened. I suppose in an extreme sense it is health care because they’re bringing us back from the brink and they’re making us reasonably whole again to get on with our lives but in terms of long-term health and wellness, I don’t see them offering all that much.

I do find it telling that the person I was discussing health care with the other day has a doctor in the family, and although the person I was talking to is a very accomplished professional in their own right, they still have this wide eyed admiration for medical people, and they seem to have bought into the hype that’s been pitched to their family member. I get that every industry needs to protect itself and standards have to be kept, but the brainwashing about the noble causes and the character of everyone involved, the mythology around how right they are and how wrong everyone else’s, and that mystique that they develop around medical doctor status is something that is evident, and also needs to be taken into consideration.

So all of this is a long way of saying that in my TBI recovery, my physical health has really come front and center. What I have come to realize over the last 12 years of experience, observation, I really looking closely at what was going on with me while trying to dispense with the blinders that we all have about what we are experiencing and what that means, is that the body play such a critical part in TBI recovery.

In fact thanks to new research that’s come out and that people are starting to pay attention to – and it’s always helpful of people do pay attention to new research, because what could we do if they didn’t? – the physiological processes that get fired off by the brain make a huge huge difference in the experience and the recovery of the individual who has been brain injured. A brain injury is never only inside the brain it is also throughout the entire body. The brain is command central 4 all of the body’s processes. Cannot enter the brain without entering the body as well – or at least affecting it. There is inflammation that happens. There are crossed wires that happens. There is the biochemical reaction that goes along with fight flight, which then either short circuits you completely, or simply prevents you from learning the lessons that you need to learn. It’s a combination of brain body and all of the things that make it possible for them to communicate with one another, and act as one.

So for me to continue my recovery, I need to really take care of my body and I can’t very well do that, if my doctor won’t give me my numbers. this is one of the things that I think keeps TBI and concussion survivors really heal from their injuries. There is the assumption that we are unable to think clearly or the cognitive we capable. I experience that with the physiatrist who I was seeing very briefly several months ago. As soon as they found out about my history of mild TBI eyes, they started treating me like a child and they acted like I needed to be spoken to very very slowly. Granted, I had told them on my intake form that when I’m tired I sometimes don’t get things the first time, but the whole way that they approached it, I found very dismissive and also not very enlightened.

This is one of the things that makes it so difficult to do a thorough TBI recovery in short order. I am convinced that if doctors could more fully understand and appreciate our situation if they really understood as people what we are experiencing with TBI, it would make it at least a little easier for them to treat us more effectively, and also improve their practice of medicine. I don’t think that any doctor really wants to run around and do harm to people – well, I suppose some do, but those are extreme exceptions to the case – and I would think that any kind of insight or additional learning that would help them better understand what people go through when they experience a traumatic brain injury, would be welcome within their community. However, it seems that they are much more interested in maintaining their status as experts in the world of medicine, then providing the best care possible in ways that their patients actually need it

I know that I am raging against the machine, and there is only so much that can be expected considering all of the generations of tradition that has been baked into this whole way of practicing medicine, but I think it’s still worth considering.

The other thing is, even though I might get medical care that doesn’t really seem to suit me that well, and is more infuriating than it is helpful, this is not the end of the story. I am NOT 100% dependent on doctors for my health care. I am fairly self sufficient in terms of seeking out information about my condition as well as being proactive in taking care of myself. I do a fair amount of reading and research in nutrition healthy living exercise and the latest research that shows us how our bodies work and how we can work better with them.

There is a wealth of information online that we can access that tells us many things that we need to know. And a lot of it is put in terms that everyday people can understand. Now of course, a lot of it is total crap, and you can’t believe a word that people say, or worse – and this is a very tough thing about the Internet – maybe half of what they say is correct, but you never know which half is correct so you have to do additional research and you have to do additional analysis and follow up and take everything with a grain of salt.

In the end, I think that the better we take care of our bodies the better our brains respond. I know that’s true with me, as my recovery has just been phenomenal, & I have incorporated many many physical aspects into it. From the food that I eat, to the exercise that I do, to the supplements that I take, as well as just paying attention to how I’m feeling and understanding how my physical feelings actually affect my mental health I have put together what feels like a very solid recovery.

Now, I have my bad days – and yesterday was one of them – but they are few and far between, compared to how they were before. Before I was a ticking time bomb a walking disaster zone, & I could not figure out for the life of me what was wrong. Everything was wrong. And I didn’t know why. That has completely changed and taking care of my physical body has played a huge role in that.

There’s more that I would like to say, but this post is getting long. It has been a long week, and I have been pretty busy at work, so I’m tired, & I have another busy week ahead of me. so I’ll stop here and get on with my day.

Have a good one and don’t forget to enjoy.

Vitamin D3 is your friend

Vitamin D3 is your friend - learn more at Found My Fitness - http://foundmyfitness.com
Vitamin D3 is your friend – learn more at Found My Fitness – http://foundmyfitness.com

#1 Takeaway: Vitamin D3 is essential for brain health, healing, and a healthy system. If you read nothing else, please make sure you get enough Vitamin D3. You can get it at any drug store or supermarket. It’s possibly one of the cheapest ways to heal up and stay healthy.

Including brain-healing and brain-healthy.

And it’s made a huge difference for me.

Now, for years my Vitamin D3 was low. My doctor (rest their soul) measured it each year and told me to just take 3,000 IUs a day, I’d get better. But they never explained to me exactly *why* I needed to take my Vitamin D3, other than it having to do with my bone density.  So, I never actually took as much as I needed, and sure enough, year after year, my numbers went down… and down… and down… dangerously low. And I stayed that way in the interim, which can’t be good.

This is the doctor who just passed away last month after an 8-month battle with sarcoma. I really liked them, yet in some respects, I felt I wasn’t getting proper care. And if they hadn’t passed away, I would be working with another doctor. The Vitamin D3 thing is a big reason for that.

All the while I could have been checking intermittently to see how I was doing. But it wasn’t until I’d been low-low-low for something like 3-4 years that they actually scheduled follow-up tests. And then my levels bounced back. Because my neuropsych explained to me some of the importance of Vitamin D3 to cognition and feeling like a normal human being… and I also did some research on it.

But did my doctor (rest their soul) tell me any of this?

No.

And that is a huge problem.

I’m going for my annual physical today. I’m 4 months overdue, because I was waiting for my doctor to return, which they never did. I’m going back to the same practice they were at before, because they have all my records, and I don’t feel like starting from scratch right now. After I have this physical and get my blood drawn and get my numbers, I’ll move on. I’ve found some doctors who look like possible candidates, and I’ll be interviewing them over the coming months. I take my health very seriously, and I am on a preventive care mission, to keep things from spiraling out of control like they have before… and also to make sure I am healthy for a long, long time.

I’ve just now come out of the woods with my TBI issues, and I don’t want to squander any more time on needless suffering and drama.

Vitamin D3 is a big part of it. I take 3,000 IUs religiously each morning – with my calcium-magnesium, B-Complex, Glutathione, Taurine, and a probiotic with 45 billion little bacteria to keep my gut healthy. I started with the Glutathione and Taurine a couple of weeks ago while I was on vacation, and I can’t sense any detrimental effects, so I’m going to keep taking them.

The king of them all, however, is Vitamin D3. I’ve been listening to Rhonda Patrick talk about it on Joe Rogan’s podcast. Here’s a video of it — it’s long — 3 hours. But the first hour has a lot of good stuff in it about Vitamin D3.

Apparently, D3 controls a whole bunch of things, and according to a theoretical paper by Dr. Rhonda Patrick, low Vitamin D3 could be implicated in things like autism. It’s all very complicated, but seratonin is involved, which is also related to gut inflammation, and it also has to do with other conditions where the gut is inflamed.

And I wonder if low Vitamin D3 hasn’t played a role in my brain not functioning properly — as well as often having been taken for autistic by people who just met me. I know I have a lot of abdominal inflammation — that’s another thing that my past doctor (rest their soul) said, every time I went in for an annual checkup. They noted it, but they didn’t actually take steps to do something about it. It’s like they expected me to tell them what to do.

I dunno. So much of the research is new and emerging, it’s hard to keep current, but if there are persistent issues that show up every single year and don’t change over time — and those issues can be connected with other health issues — then it seems like a prudent thing to actually do something about it.

Right?

I think so. And after today, I’m looking for another doctor who will take a preventive approach — not treat the human body like an overly complex system that cannot possibly be understood by any one person. That’s like saying, because I don’t understand the minutiae of electricity, I  shouldn’t change the lightbulbs in my house, turn off the lights when I leave a room, or use energy-saving appliances. It’s like saying, because I don’t understand precisely how your car functions, you shouldn’t clean it or put gas in it, or do preventive maintenance. You should only take it to the mechanic when you hear a sound you cannot explain, or you break down by the side of the road.

People take better care of their vehicles than their bodies, by and large. If we know how to take care of our cars, why not apply those same principles to taking care of our bodies?

And why not take Vitamin D3? Seriously, the cost is so low, and the benefits are so immense, it only makes sense. It might even help clear up cognitive/behavioral issues for you — like it did for me.

I cannot say enough about this. And the more I listen to Dr. Rhonda Patrick talk about it, the more convinced I become.

Take your Vitamin D3 people. It is the one thing that will look out for you, when no one else will.

After concussion – I’m not stupid, you just think I am

This is an extension of the piece I wrote years ago (January, 2011), called “After concussion – you’re not stupid, it just feels that way“. I’m writing this after seeing a physiatrist for a follow-up appointment regarding neck & shoulder pain/stiffness and tingling and weakness in my left hand and arm. They had given me a prescription for a physical therapist to get some help, but I never got PT help, because:

  1. Carving time out of my schedule is a challenge. I already have two standing appointments after work, each week, and a third (and sometimes a fourth) usually shows up, which doesn’t leave me enough time to rest.
  2. The one PT who I am interested in seeing has an office a good hour from my home, which not only makes it tough to find the time, but it also threatens to wipe out any benefits I get from them, while I’m driving home.
  3. It’s hard for me to explain what’s going on with me, because I get turned around – especially when I’m tired, and my symptoms shift and change. It’s hard for me to A) remember from one day to the next how I’ve been feeling, B) track how I’m feeling without it being disruptive, and C) put into words the impact of my issues. Not being able to explain — especially to people who do not know me, and who do not know how to parse out all the information in a meaningful way… it’s just a waste of time.
  4. The PTs I’ve worked with in the past have had no clue (I mean, NO CLUE) what to do with me, when they found out about my head and neck injuries. They either treated me like I was mentally deficient, or they got so in a tizzy about my different injuries and whole host of aches and pains and issues, that they were no use to me at all. They were so obsessed with being careful, that they achieved nothing at all.And what they showed me was stuff I already knew how to do.

So, no, I didn’t follow up with a PT, and I told the doctor a few of the points above. I should have written it down, but I didn’t get to it.

The doc was a little taken aback, probably because I had seemed so compliant and cooperative when we’d met. I explained to them that I hadn’t had good experiences with PTs, and anyway, I thought I’d try to fix the issue myself with some light exercises… which has worked. Strengthening my trapezius muscles in a specific way and also stretching my neck has resolved my issues. That, and being determined to not get hooked into a healthcare system that is A) clueless about me, and B) too impatient to be of much help to me.

In the end, we parted ways with them telling me that I was going to be fine and I guess trying to be encouraging. That’s fine, but it was also a bit infuriating, because (cover your ears and/or close your eyes) Jesus Fucking Christ They Treated Me Like A Goddamned Simple-Minded Idiot. They talked slowly and said “Good job!” a lot, like I was a goddamned puppy learning a new trick. They were complementary towards me for taking things into my own hands and being pro-active, but the way they did it seemed forced, like they were making an extra effort to accommodate my “disability”.

I do not have a disability. I have a history of injuries that have changed the ways I process information, and just because I’m struggling to find the right words — “X-ray”… “arthritis”… “traps” — doesn’t mean I’m not parsing all the information as well as the next person. My brain works differently — not worse. But every time I stopped to find a word or I had to work at putting thoughts into a sentence, they got a little more “accommodating” and remedial with the way they interacted with me. The worst thing was when I started to tear up over explaining why it’s hard for me to get help.When I get angry or frustrated, I tend to cry. And you’re right, if you’re thinking “How inconvenient… How infuriating.”  It is. And that makes me even more prone to tears. Arrrrgggghhhh!!!!! &(*$^%#*!!!!

I’m sure they were trying to be compassionate and empathetic and whatever, but their total affect came across like they had to talk more slowly and put ideas into small words and lower their communication level for the simpleton in the room (that would be me). It seemed like they thought that I was less intelligent and less capable of processing information due to my history of TBI, so they had to talk to me like a 5th grader. Plus, they kept saying that everything that’s happening to me, is just because of my getting older. They said that a lot, last time I saw them. And they kept saying it with this air of “professional resignation”, like that’s just how it is, and I was a mentally deficient person who was getting all paranoid with bad thought habits, thanks to my history of head injury.

The thing is, my 50 years on the planet might be a factor, but my family members regularly live well into their 90s and  past 100, so I’ve got another 50 years ahead of me. At least. It’s medically possible now to live till 120, so we’re probably looking at 150 being possible, by the time I near that. That’s my plan, and all this talk about “well, that’s just what happens when you get old” is not helpful to my plan. It’s just a bit resigned. Pessimistic. Cynical. None of the things that actually help me… or are consistent with my own attitude towards life and living it to its fullest.

Now, if I were going to see this doctor regularly for an extended period of time, I could do something about this. They would get to know me. They would change their mind about what “has” to happen as we grow older. They would realize that they don’t have to give me me special treatment – they just need to have a little patience while my brain coughs up the right word. And I’d be able to educate them about the ways in which I am strong – so strong – instead of just what they see with the verbal issues.

But I’m never going to see them again. I can deal with my issues on my own. I don’t need to be constantly told to adjust my expectations down, thanks to the inevitable march of time. And call me crazy, but adding an hour of driving, breaking up my work day, and spending $40 a pop to go see someone who is just going to talk down to me, no matter how helpful they’re trying to be… seems like a waste of time. It was a great lesson to learn — next time I’m not going to bother going back again, if I’m actually not having any more issues. Consider the lesson learned.

It’s best that I just steer clear.

And while I’ll never have to deal with them again, most likely, this is the thing that makes me NUTS about people and their cognitive prejudices. If you’ve got difficulties putting words together verbally, people assume you’re less intelligent or are “slow”. If you have little tics or fidgets, they think there’s something wrong with you. If you don’t answer them immediately with a definitive reply, they take you for weak-minded and indecisive, and they sometimes get angry to boot. If you get tired and distracted and lose track of what they’re talking about, they think you’re not interested in what they’re saying, and they get angry. If you can’t remember things that happened only a few minutes ago, they think you’ve got Alzheimer’s or some other degenerative condition that’s making you lose your mind, and they start “helping” you remember things.

Doctors are just as susceptible. They are human, after all, and medical education doesn’t always impart insight or interpersonal clue-fulness. Maybe this physiatrist has seen other folks with concussion / TBI, and they needed the extra help. But it’s really demeaning to treat people in that way — like children, or developmentally delayed “dearies” who just need love and understanding – not cold, hard facts.

For as long as I can remember, my parents have treated me like I was “special”. Like my inability to remember things marked me as less-than. Like my losing track of things and getting lost with directions meant I was functionally impaired.

I am not an idiot. I am not simple-minded. I am not intellectually impaired.

I have a handful of issues that get a lot worse when I am tired, in unfamiliar conditions, or under pressure. I have a handful of issues that I have learned to work around. I don’t need anyone’s condescension or “help”. I just need people to cut me a break, be polite, and treat me professionally. I need them to treat me like the adult I am, and with the respect I deserve.

Is that so much to ask?

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 >>

Town and Country – Where (and how) we live should determine the treatment approach for TBI / Concussion

Not everyone lives in a city – or thinks and talks like it

Since I’ve been down with the flu this week, I’ve had a lot of time to think about how different sorts of people get — and respond to — different sorts of treatment. This can be for flu… or it can be for traumatic brain injury / concussion. The basic paradigm is the same, across the board, I believe. And it’s something I think we really need to consider, when it comes to treating TBI / concussion.

One thing I have noticed, over the course of my life, is how I am often at odds with my doctors over being self-sufficient… to the point of being considered a “risk taker” with regards to my health. This includes doctors, dentists, neuropsychologists, therapists, nurses, etc. The thing they don’t seem to understand, is that this is how my whole family is – has always been.

See, here’s the deal – even though I have spent half my life in cities and half in very rural settings, I come from a rural family. I mean, frontier-rural — prairie rural. My great-great-great grandparents (on both sides of the family) were some of the “sod-busters” who moved out into the newly opened prairie (my apologies to the Native folks who were driven off — I am really deeply sorry for what was done, and it’s a little horrifying to me that my ancestors benefited from your terrible losses).

Before them, too, my ancestors were adventurers and explorers who traveled far and wide throughout the European world, and lived on the margins of “mainstream” society. They were self-sufficient. Because they had to be. Same with my great-great-great grandparents. They lived miles from the nearest doctor. He was usually a day’s wagon ride away. If you fell or got sick, you had to make do, until he got there, or for as long as you could.

Sometimes you couldn’t even get a doctor.

Given this fact of life, my family — both sides of them — had to develop a self-reliant quality that would keep them alive and keep them from depending too greatly on professional help for their daily needs.

Contrast this with folks in cities or other developed areas, where you can get to professional help within hours, if not minutes. In a city, or in a developed community, the challenge is not keeping yourself alive, it is learning to communicate the details of your ailment/need to the professional who can help you.

Now, let’s fast-forward through time to today — when I am still as independent as anyone in my family, and I look for solutions of my own to issues I face.  My doctors/providers approach me at times as though I am “hostile” to their help, when all I’m doing is having the same orientation of independence that folks in the middle of nowhere have to have. I also live at some distance from the nearest hospital I trust implicitly, so I have to choose carefully when and where I get my medical care.

It’s not that I am uncooperative or hostile. I am rural at heart. Self-sufficient by nature. I am my great-great-great grandparents’ offspring (aside from the Native antagonism), and that’s how I stay alive. It’s how I always have, and it’s how I really feel I have to be, to get by in the world. But when I try to communicate with my doctor, they seem to think that I am being intentionally difficult, simply by needing to stand on my own when I can. I have to be able to function without leaning on everyone around me — which is the way that you can be when you’re in an urban environment; social interaction and interdependency is built into your dna. I’m not knocking leaning on others. If you can do it reliably, then fine. But with me, depending on others can very well shorten my life needlessly, if I disregard my own judgment an the signs I see about my own situation.

The other piece of this, which I think needs to be factored into adequate TBI / concussion care, is class. I’m not talking about taste and money, but the way in which you work and live your life. Working class folks have different ways of interacting with authority figures, than professional class folks do. I think Malcom Gladwell made a really going point of it in his book “Outliers” which is about people who do exceptionally well in life. He points out that people in professional classes are taught (sometimes from a very young age, if they’re born into it) to interact with “authority” as peers, rather than subordinates, while working class folks expect authorities to offer them guidance and direction and clear instructions on what to do.

When you “occupy” a certain class, it’s like you occupy a certain “geography” – and I would wager to say that being part of the professional class is like being urban/suburban in nature. You have more money, you have more access to other professionals (by social association as well as perks and benefits with work, etc), and you are more interdependent with others, from service providers who care for your house and your property and your money and your health (in all its manifestations).

When you’re working class, however, your world is different. The scenery is different. You have different types of friends and acquaintances, and different levels of access to different aspects of life. And you have to be a lot more self-sufficient, just as you do when you’re rural. You don’t have the same amount of money that gives you instant access to certain services and assistance, so you either have to do without, improvise, or find alternatives. That applies to every aspect of life, including health care.

And here is the big disconnect I see between the kind of help that’s offered to TBI / concussion survivors and the providers who seek to help us. At least, this has been my experience… The doctors I know and have worked with over the years have often come from urban or suburban backgrounds. And they obviously are members of the professional class. As such, even if they grew up in urban surroundings, they are now part of a class that is by its nature geared towards interacting with other professional class members as peers, rather than as superiors/subordinates. So, when folks come to them asking for help, and those folks are from working class or rural backgrounds, the docs don’t always ‘get’ what’s expected of them in that relationship. Either that, or the docs aren’t willing to meet their patients half-way with language and communication that bridges the gaps in class and background.

A prime example is my own experience with my PCP – I have a great doc, who it took years for me to find. They have my best interests at heart, and they are very personable towards me. They clearly want me to be well, and we have had some great exchanges. But they just don’t get my need for self-sufficiency. And they seem to think that my wish to be independent and self-sufficient is a sign of distrust of them and/or our relationship. They see my reluctance to get flu shots as being stubborn, when my real rationale is that it’s just plain unhealthy for a human body to not build up its own resistance to heavy-duty infection (as unpleasant as the building up process may be). They interpret my need to call the shots in my own life and make my own health decisions, as disrespectful of their expertise, when it’s just me exercising the very essential mental muscles, so that I can have some say in my own destiny. It’s a little problematic for our relationship, and I need to do some clearing up, when I get a chance.

I may get this chance on Friday. Or not. But whether I do or not, it’s always going to be a factor with them. On Friday, I hope to ask them if they were raised in a city or in the countryside. That should shed a lot of light on the dynamics. We’ll see how that turns out.

In any case, I think especially when it comes to post-TBI care (be it medical or ongoing rehab), the socio-economic background of the individuals involved needs to be factored in and adapted to. This is something that every medical school should teach, in my opinion, because teaching young doctors to realize the differences between individuals based on class and where they live, could truly transform the doctor-patient relationship – especially with regard to such gray areas as concussion / TBI.

Specifically with regard to concussion / TBI, I think it would make sense if there were different ways of instructing Emergency Room visitors to handle TBI recovery. Instructions should be phrased differently, based on the person — not over-simplified “d’oh” language for hayseeds, but plain English for those who need that, versus more technical explanations for those who need that. The English language offers many different options. We should use them all, in explaining proper TBI care to patients who desperately need it.

Beyond immediate medical response and care, I’m sure there are elements of rehab that could also be modified to accommodate different classes and geographies, but I don’t know enough about them to speak to them. All I really know about is dealing with my own doc who seems to think they know enough about TBI and don’t need to factor that into my overall healthcare, let alone discuss the impact it might have in individual circumstances. TBI and the issues that arise from it touch on every single aspect of my life, yet my doctor just seems to dismiss it. And when I bring it up, they just get nervous — perhaps because it’s not something they can fix with a pill or a prescription. And it’s also not necessarily something they can bill insurance for. If they can’t bill for something, they’re not going to spend the time. It’s not that they’re negligent — they are under pressure from their practice to log truly billable hours. I’ve seen that first-hand, and it’s not pretty.

I think, in the end, there are significant aspects of our lives which are not getting due respect, because they’re concealed beneath the layers of socio-economic bias that separate so many of us. And nowhere is it more visible, than in healthcare — particularly in care for those who have sustained TBI / concussion. People who do rough, dangerous jobs stand a greater chance of sustaining a traumatic brain injury, than those who sit behind a desk all day. And those who do rough, dangerous jobs, tend to not have Ph.D. after their names.

What’s more, out in the country where you’re living a bit closer to Mother Nature than when you’re in town, you’re more exposed to the kinds of events that will get you hit on the head. Farming accidents. Building accidents. Hunting accidents. ATV accidents. Falls. Tornadoes. Storms. Floods. Sinkholes.  The list goes on. And if ever there were a need, it’s for people with the power and influence to provide advanced medical care, to make it more accessible to those without the letters after their names and the zeroes a the end of their salaries.

I’m not asking for hand-outs or charity. I’m just asking for common sense. In the end, access to quality care isn’t just about proximity and availability, it’s also about interpretation and understanding.

Sometimes, understanding is what we need the most.

Long-term dangers of pediatric concussion/brain injury

Football less dangerous for kids?

The Concussion Blog has another thought-provoking post about an announcement made by Dr. Howard Derman, co-director of the vanguard Methodist Hospital Concussion Center that children’s brains are (apparently?) better able to tolerate the effects of concussion. From what I read — also in the orginal article at Beyond Chron — the plasticity of a kid’s brain, along with its greater amount of room to handle swelling, makes (football-related) concussions “less of a concern” for children.

“I’m not saying it’s safer to play football as a child,” said Dr. … Derman,… “but the plasticity – flexibility, in layman’s terms – in the brain is greater in a child, and it has more room to swell. So things we see in adult football players are slightly less of a concern in children. That’s just a statement of fact.”

Okay, so let’s assume that the doctor has his facts right, which is up for dispute by a number of truly independent writers and investigative journalists. Even if a kid’s brain is more resilient (and I’m not agreeing that this helps), another fact to be taken into consideration is that having a concussion makes you more susceptible to having others. And speaking from experience, the cumulative effects of childhood concussion into adulthood (which brought with it yet more concussions/tbi’s), can wreak havoc long after the initial injury was sustained.

What concerns me about this statement — aside from the fact that it was made by a physician with ties to professional sports teams, whose word is probably taken as gospel in certain circles — is that it treats childhood concussion/brain injury as an isolated incident that you really don’t need to worry about, because, well — as so many people have said over the years — chances are everything will clear up and things will go back to normal.

I truly wish I could say that was true for me, but from where I’m sitting, those supposedly harmless blows to my head when I was younger, led to more supposedly harmless blows… which ended up sidelining me not only from games, but from the game of life.

And this was some 30 years after my first concussion — the first of many, which had cumulative effects over time.

Where does that leave me? Still working to pick up the pieces, still trying to avoid meltdowns, still trying to keep my act together at work, still hassling with light and sound sensitivity, as well as continuous fatigue. I won’t say “chronic fatigue” because chronic implies that it comes and goes indefinitely. With me the fatigue just never goes away. Oh, well.

And where does that leave the people around me? Stressed out for reasons they don’t fully understand, and scratching their heads wondering WTF?! when I do something truly boneheaded.

And where does that leave my community? Well, my immediate community as well as my country, have lost about 40% of my original tax revenues since late 2004, when I left a good job because I just couldn’t hang in there after my last TBI. Say what you will about the individual being responsible for pulling themselves up by their bootstraps. Thanks to (undiagnosed and underestimated) TBI, my employment situation is at 60% of what it should be. And in the past seven years, the loss in tax revenue is thus equal to about three years of full-employment tax revenue. By the time I stop working (if I ever do), thanks to the TBI-related gaps in my employment history, the lost tax revenues will probably be equivalent to me retiring and no longer contributing to the collective kitty at least 10 years early. If not more. Can the government afford this? I’m not sure — especially considering that I was born at the tail-end of the Baby Boom, and it’s my tax dollars which will be buoying up the aging generation of retirees right before me, as the younger generation struggles to just pay off their credit cards and student loan bills.

It’s tax time, and I’m hassling through yet another data collection process — which is so much harder than it used to be, even though my taxes are significantly less complicated than seven years ago. In the process, I’m thinking about the effects of my injury on my tax rate. And while I don’t really chafe at how much money the government is scooping out of my pay (so long as I can just live my life and I’m not being totally flayed), if Uncle Sam did the math on how much revenue is lost to TBI each year, thanks to fully employed people becoming under-employed (or un-employed), I’m guessing they might take it a little more seriously.

Seriously, we live in expensive times, and I’m willing to help pay for roads and schools and infrastructure and War on Terror and national parks and all the things we tend to happily take for granted. Somebody’s got to. But it’s difficult to really contribute when you’ve got this whole… deal going on. And it’s difficult to take seriously a prominent doctor who claims that a contact/collision sport like football poses less of a problem to kids than to full-grown adults. Especially when I look at the long-term effects that one seemingly innocuous concussion after another can — and in my case, did — have on a young brain, and a young life.

So, in the end, it’s caveat emptor as usual. Be smart. Consider the sources, and draw your own conclusions. And remember, just because you have “M.D.” after your name doesn’t make you the ultimate authority… even in your chosen field.