Looking for the original post? It’s moved here – https://tbiresearchriffs.wordpress.com/2016/02/16/research-papers-on-post-concussion-syndrome-pcs-and-psychological-factors/ – to my brain injury research blog.
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.
This post How I learned to slow my heart rate is by far the most popular one on this site, and it has helped a lot of people, from what they tell me. Folks have shared links to it, and hundreds of people see it each week, which makes me very glad.
Some have even said it helped “save their life” — and that makes me even happier 🙂
It’s actually a really short post, so I have written an extended PDF version of this that you can download and save to your computer, tablet, or smartphone. You can also share it with others. It’s free.
Please remember: I am not a doctor. I am not qualified to give medical advice. I have just found a technique that works for me and helps me get my heart rate under control in a few minutes. I hope it helps others, but it’s not a substitute for medical care. See your doctor if you have issues and/or concerns.
Thanks. And be well.
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.
Okay, the flu is subsiding, and along with it goes my regret over not pushing myself harder to do everything I’m “supposed” to do… as well as my interest in the flu vaccine and my appreciation of Tamiflu. A reader tipped me off to aluminum being used as an “immune agonist” (something that triggers your immune system to go into overdrive) in the flu vaccine, which would not bode well for someone who is already dealing with enough brain complications. Like I need to add a direct shot of aluminum to the mix… not. The other thing about these immune agonists is that they can blast your system and get it stuck in high gear, like a runaway Prius, essentially making you artificially sick for longer than you would otherwise be.
It’s interesting, that the whole concept of vaccines triggering the immune system is sacrosanct and unassailable by the mainstream medical establishment, while homeopathy, which operates on the same basis — except in much smaller, individual ways — is persona non grata in mainstream medical circles. I’m not advocating homeopathy, by any stretch — sometimes it works for me, most of the time it doesn’t. I’m just saying there’s a curious inconsistency there.
My fever is down to normal again. It’s been in the normal range since yesterday, with a slight rise past 99 yesterday afternoon and evening. This morning I am normal. I am still coughing up mucus, and I am still weak and get worn out after going up and down the stairs just once, but I am definitely on the mend. That being said, I’m discontinuing the Tamiflu, after reading about what’s in it. It’s only supposed to work for the first 36 hours, anyway, and I’m past that point, so I’m stopping it – even though common wisdom is that you need to finish everything you start. Personally, I’d rather deal with the rest of this with sleep and fluids and not eating a bunch of crap (not to mention airing out my room frequently, changing my bedding, and bathing often to wash the infection off me) than be dependent on something like Tamiflu.
Of course, I’m all spunky now — but where was I just 48 hours ago? Pretty much of a simpering hunk of bones.
But it happens. To the best of us. The main thing is what comes out of it in the end.
What’s coming out of this for me is a renewed vision of where I’m headed with my work, my career. After all the meetings with the New Boss last week, I had a lot to think about. And the bottom line is, they keep changing their mind. One minute I hear, I’m going to be earmarked for a top slot with people who report to me. Then I’m told that I’m going to basically be the organization’s Blue Heeler, running around and nipping at the heels of all the people who don’t want to cooperate. Then I hear that I’m going to be doing something else. It doesn’t inspire much confidence. Being flexible is fine. Being flaky is not. And I just don’t have time to get dicked around by people who either don’t know what they want, or aren’t strong enough to stand up to bullies. Being bullied by one or two people is bad enough, but the whole organization? No thanks.
So, back to my original plan… beef up my skills and keep moving. I’m getting a little sick of being pulled this way and that, so I’m just going to keep with my own blueprint and take it from there. I’m going to use this opportunity as best I can, learn what I can from it, and in the meantime use my dissatisfaction as motivation to make my own progress and improve my own lot. It’s nice to think I can rely on others and trust them, but now I have seen how very un-strong they are, how easily pushed they are from this to that direction, and there is just no way I am taking my lead from people who are that weak and un-grounded.
It’s like that “crack the whip” game we used to play when we were kids — when the person at the head of the line gets “cracked”, the people at the end get whipped around.
Yeah, no thanks.
So, it’s all evolving. I can’t get down on myself for having thought I could make something of this new opportunity. I wanted to at least give it a chance and see if it could work. Maybe I could make it work, but it means: more time away from home, more time traveling, more time commuting, less time to actually do my work, less time for the things I want to do with myself… not to mention more of the kind of work that I just don’t like to do — politics, organizational navigation, all that… through an organization that treats me like a second-class citizen because I’m not at HQ. After all the years that I’ve been doing what I’ve been doing, I just can’t see the point.
So, for now, it’s where I am… but for the long-term, I want something different. That something different will have to wait until after I’m better, though. Right now, it’s about all I can do, to get clear in my head about what direction I want my life to go. So, I’ll watch another samurai movie, have some chicken soup, and get some more sleep.
What will be, will be. But something that goes against everything I want for my life, doesn’t have to “be” forever.
I had my doctor’s appointment the other morning, and it went pretty well. I got some antibiotics for the infection that has been bothering my ears and making it hard for me to keep my balance, and I gave my doctor the holiday card my spouse told me I needed to give to them. It was a good call – and I picked out a good card, because it really touched my doctor a lot. They didn’t want to let on, but I could see it meant something. I mean, if you think about it, doctors spend their lives trying to help others. They have their limitations, like all of us, but in the end, their whole reason for doing what they do is to help people.
I have been taking my meds for the past few days, but I’m still having balance issues. I’m going to keep on doing it, and hope for the best. I really don’t want to go back, though. It’s just more opportunity to get put on more meds — which my doctor tried to do, when I told them about the balance issues. They tried to put me on meclozine / antivert, thinking that would fix what was wrong with me, but I told them no, because that stuff just makes me feel rotten and weird and dense, and it doesn’t do a thing for my vertigo. It’s supposed to fix the nausea thing and supposedly make me feel less dizzy, but it’s an antihistamine and the side effects whack me out.
Drowsiness and tiredness and that weird spacey feeling that antihistamines give me, is just not worth it. So, I told them not to prescribe it. Even if they had, I wouldn’t take that stuff. Like I need more crap in my system…Anyway, I can always take Dramamine if it comes to that. I’ve taken it for seasickness and it seemed to help me. At the same time, it still make me feel weird and “off” and the fishing trip I was on was a lot less fun because of it.
Anyway, I had been planning on “having the talk” with my doctor about not being a risk-taker, just having a hard time sorting through the myriad little “issues” I have on a daily basis. For any doctor who is reading this, please take note: TBI can introduce a whole host of physical issues, from noise sensitivity to light sensitivity to touch sensitivity to pain to ringing in the ears… a whole host of physical issues that can cloud the overall picture of one’s health. And that’s not even the mental health issues, like depression and anxiety, which can make everything seem 1000x worse than it really is… or it can make everything seem like it’s nothing at all. This obviously has implications for patients with TBI being able to accurately self-assess their level of well-being. And it’s helpful to address that aspect of our experience.
The only problem is — and I realized this when I was driving to my dr. appointment and was thinking about the best way to broach the subject. I thought about how I would approach it, how I would introduce the topic of my not being a risk-taker, but just a person who struggles with sorting through all the stimuli of each day… and I considered (based on past experience) what my doctor’s response would be.
I’m glad I did think it through, too, because it gradually dawned on me that if I talked about my issues the way I was, my doctor would try to prescribe me something. Or prescribe tests. Or try to DO something, instead of just understanding and thinking things through and letting that inform their approach with me. They tend to jump right into action! as though that will solve anything right off the bat. Sometimes it does. But in some cases, you don’t need a procedure, you need comprehension and understanding and a slightly different way of approaching things.
Knowing what I know about my doctor, after seeing them for a number of years, I really think that if I’d “had the talk” about my issues, I might have ended up fending off a slew of prescriptions and tests — they’ve already tried to get me CT-scanned and/or X-rayed over sinus issues. I mean, I’m sure they mean well, but I am not exposing myself to a bunch of radiation over a sinus infection. Seriously… It’s just not going to happen. Not unless I am in serious danger.
Likewise, I’m not going to raise a red flag that my doctor is going to treat like an invitation to charge. They’ve got a bit of a fight-flight predisposition, and the last thing I want is to have to try to explain and fend off their headlong charges and attacks against what might be vexing me, when all I really want is for them to temper their responses with a little more knowledge. I can easily see them ordering a bunch of tests and prescribing a bunch of meds, in the interest of helping me… and all the while, I just get sucked into the medical system with more crap on my chart to fuel the standard-issue medical responses that pathologize and (over)medicate my condition… when all I really need is some understanding and consideration. All I really need is for people to slow down… but knowing my doctor, that’s not going to happen anytime soon. At least not with them.
So, I didn’t have “the talk” with my doctor, and I’m a little disappointed in myself. At the same time, though, I’m glad I thought it through carefully ahead of time. In a way, I feel like I may have dodged a bullet from a weapon that I had trained at myself. I unloaded the weapon and put it down, and now I’m feeling a bit better. What I really need to do is speak up, in the course of conversations, when I feel that things are going too fast or my doctor says something that doesn’t sit right with me. Sometimes I can speak up and defend myself quickly, other times I can’t. I’m working on that. The times when I don’t speak up, I feel terrible afterwards, so that’s more impetus for me to practice speaking up.
That was something I did do on Friday — I spoke up about the meds and the tests and the assumptions my doc was making. They seemed a little peeved that I was questioning their judgment, but you know what? It’s my body, it’s my life, and I need to do what I need to do. Provided, of course, I’m not putting myself in danger.
Anyway, that’s one example of things not working out as planned, and it being okay.
Another example is last night, when I decided to go to bed early, then I got caught up in going on Facebook “one last time”. I swear, that thing is a massive time-sink, and I have to be careful. By the time I got to bed, it was over an hour later, which just sucks. Oh, well. I’ll just have to nap today. I had planned on doing some last-minute Christmas shopping, but the other thing that’s happening is that we have company from the party last night. Rather than driving home, we had someone stay over, which is fine. But now I need to be social and hang out, instead of running out to the mall. That’s annoying to me. But come to think of it, I actually knew that we might have company staying over, so I’m not sure why I was thinking that I was going to run out, first thing this morning, and take care of that. More annoyance — this time with myself.
Oh well — tomorrow is another day, and I can probably get all my shopping done early in the morning before the crowds hit the mall. I pretty much know what I want, and there’s not much of it, so it will keep things simple. Plus, having less time to spend on it really focuses me. Even if that doesn’t happen, and I get stuck in the crowds, and the lines are long, and I get trapped in the holiday crush, I can always check Facebook while I’m standing on line.
So, yeah – plans. I have them. We all have them. And when they don’t go the way we expect them to, then it’s up to us to decide how we’re going to handle them. I can get worked up and bent out of shape. Or I can roll with it and come up with another course of action. I can get annoyed at this, that, and the other thing, or I can just let it all go and see what happens. When I’m tired (like I am today), I am less able to just let it all go. When I am stressed (like I am over my job, even though I am off on vacation for a week and a half – the residual stress is ridiculous), it’s harder for me to just BE.
I’ve noticed an increasing level of intensity with me – I’m starting to lose my temper again (though inside my head, not out in the world around me so much). I’m starting to react really strongly to little things… like I used to, before I started exercising regularly and doing my breathing exercises. I’m noticing a change, and I’m not liking it much — especially the parts where I’m not rolling with changes as well as I would like to. Things are starting to sneak up on me again.
So, it’s back to using the tools I was working with before. Despite my good progress, I had gotten away from the exercise and the breathing for a while, in part because I just got so uptight over doing it each and every day like clockwork, and also because I just needed to let it all sink in for a while. I was working really hard on my technique and also my regular practice, and it got to be just another chore that didn’t have much sense to it. I just hit an impasse with it — maybe I had too many ideas and my head was spinning, maybe I had too much experience that I needed to just get used to… in any case, I needed a break.
So, I took a break. And I must admit it was a pretty big relief to not “have” to do the sitting and breathing every morning. All of a sudden, I had extra time, and ironically, I felt like I could breathe. I was still doing intermittent breathing throughout the day, when I felt my stress level increasing, but I didn’t have a daily practice.
Still, I do feel like I need to get back to a bit of that again. I’ve had my break. Now I need to try it again to see how it helps me… pick up where I need to — maybe where I left off, or maybe somewhere else… Just do what I need to do to get myself back on track and take the edge off this intensity, which has been building and is starting to drag me down.
Things change. Plans change. What we think we can do is often very different from what we can do, which is also different from what we DO do. Life has a way of changing directions on us when we least expect it, and the only constant is change. So, I need to work on my flexibility and chill-ness, so I don’t end up ship-wrecked over every little thing. Yeah… I need to work on that. And so I shall.
Now, to go for my morning walk in the woods.
The change of the season is upon us, and with it comes a host of adjustments. That includes physical adjustments, as the daylight gets shorter, the weather starts to get colder, and the bare-feet-and-shorts way of life becomes less practical.
I guess I’d been in shorts and bare feet a little longer than I should have, because I’ve felt myself getting cold in the evenings… and I’ve been sneezing. Also, kids are back in school, so the parents I work with are getting exposed to their kids who have been exposed to other kids back from summer vacation. My spouse was also out and about with a bunch of folks, last weekend, some of whom were fighting off colds.
Between all the different sources of infection, and my run-down attitude and over-run schedule, it’s no surprise that I’ve gotten wallopped by a major sinus infection. I went into work yesterday because I had so much to do, but I was home today… and then I found myself unable to function at all, so I called my doctor, and called it a day. Talk about feeling crappy… jeez, what an infection I have. It’s also affecting my ears, which as my doctor worried – they’ve ordered me back to see them in a week, to make sure my ears are okay.
All in all, the day wasn’t a total waste. I did get some things done this morning, in the hour or so that I was able to answer email. And I managed to get my car inspected (I remembered last night that today is the last day in the month, and after today, my registration is expired). My car sailed through with flying colors. That’s done for the year. I’ve got to take the van in next month (starting tomorrow). Maybe I’ll do that sooner rather than later, just so I can have it out of the way.
Then I came home, had some chicken soup for lunch, and crawled into bed for three hours. I just got up a little while ago. I made myself some hot tea — nasty, foul “cold season tea” that has to be some of the most vile tea on the planet, but hey, it works — and if I can smell its nasty odor, I know my sinus congestion is being relieved — it’s a mixed comfort.
What’s really a comfort is knowing I have three days ahead of me to convalesce. I would feel cheated, if I had a bunch of things I wanted to do for the long weekend, but honestly, it was all plans for study-study-study and practice-practice-practice for me, and I can do at least some of that while I’m on the mend. Plus, being sick kind of gets me off the hook, when people call ’round to see if they ca scare me out of my corner of the world and go have some FUN!
My idea of fun is a bit different – study-study-study and practice-practice-practice are my idea of a good time… out on my deck in the late summer sunshine. It’s all good. And I do need to take some time to study and practice because I have a technical screening next week for my possible new job. At first, when I heard about the screening, I was really nervous, because the last time I had a technical screening, I fudged my way through it and I was given a pass by the people who wanted me to work with them. This won’t be happening this time, probably, because the people I’m interviewing with are not my friends and they have a vested interest in screening out duds. I need to make sure I don’t come across as a dud. I’m not one, and I need to really chill myself out, so that I can function at my peak.
I got a little boost from another blogger who wrote:
Attitudes are truly contagious. I make an effort to keep my attitude positive especially in the face of negativity, challenges and emotional vampires (people who literally exhaust you emotionally). When I continue to share love and kindness in all my actions with no expectation of anything in return, I ultimately feel better. My energy level is higher.
Have you seen this in your own experiences? Go into any situation with a positive attitude and you will feel great afterward. It is a double blessing when you receive a winning outcome, especially if the others involved come out of it with a positive attitude. This builds positive relationships with people.
On the flip side, when you go into a situation with anger or another negative attitude, most likely you will infect others. They will be negative right back at you. That would benefit no one! Nothing invites more positive attention than a great attitude. Awareness is key; keep your attitude in check. Remember, attitudes are contagious. Is yours worth catching?
True, true, true. Good words. I’ve bookmarked their blog, so I can come back again and get a good reminder of where my head needs to be.
I think my head is at that place right now. Despite being sick as a dog and feeling like week-old roadkill, I’m feeling pretty positive and focused. Until this evening, when I usually start to feel worse and I spiral down into a ball of dark pain before I sleep — hopefully through the night. Then again, there’s no guarantee that I’ll feel that way tonight. It’s just what I expect.
But it doesn’t have to be that way. It might be completely different. You never know.
BRONX, N.Y., June 8, 2012 /PRNewswire via COMTEX/ — Patients vary widely in their response to concussion, but scientists haven’t understood why. Now, using a new technique for analyzing data from brain imaging studies, researchers at Albert Einstein College of Medicine of Yeshiva University and Montefiore Medical Center have found that concussion victims have unique spatial patterns of brain abnormalities that change over time.
The new technique could eventually help in assessing concussion patients, predicting which head injuries are likely to have long-lasting neurological consequences, and evaluating the effectiveness of treatments, according to lead author Michael L. Lipton, M.D., Ph.D., associate director of the Gruss Magnetic Resonance Research Center at Einstein and medical director of magnetic resonance imaging (MRI) services at Montefiore. The findings are published today in the online edition of Brain Imaging and Behavior.
The Centers for Disease Control and Prevention estimates that more than one million Americans sustain a concussion (also known as mild traumatic brain injury, or mTBI) each year. Concussions in adults result mainly from motor vehicle accidents or falls. At least 300,000 adults and children are affected by sports-related concussions each year. While most people recover from concussions with no lasting ill effects, as many as 30 percent suffer permanent impairment – undergoing a personality change or being unable to plan an event. A 2003 federal study called concussions “a serious public health problem” that costs the U.S. an estimated $80 billion a year.
Previous imaging studies found differences between the brains of people who have suffered concussions and normal individuals. But those studies couldn’t assess whether concussion victims differ from one another. “In fact, most researchers have assumed that all people with concussions have abnormalities in the same brain regions,” said Dr. Lipton, who is also associate professor of radiology, of psychiatry and behavioral sciences, and in the Dominick P. Purpura Department of Neuroscience at Einstein. “But that doesn’t make sense, since it is more likely that different areas would be affected in each person because of differences in anatomy, vulnerability to injury and mechanism of injury.”
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.
Here’s more discussion of The 10 Myths of Head-Injury — with some strong disagreements by me, which when considered seriously, might actually improve the quality of care of TBI survivors.
This is what Thomas Kay, Ph.D. and Muriel Lezak, Ph.D. have to say:
Myth #4: The Lourdes Phenomenon
This is often a side effect of subscribing to Myth #1 (the Myth of “Recovery”). The reference is to the town in France (Lourdes) where miraculous cures of illness are reputed to take place. There are many families who firmly believe that some “miracle” will occur after brain injury and return their loved one to normalcy (recovery).
BB: Okay, first of all, let’s define “miracle” — is what people are expecting actually a “miracle” compared to what science/medicine imagines is true, or is it miraculous by everyday standards? I can see how a belief that some magical event will take place to bring a person back to how they were may be unrealistic and self-defeating. But at the same time, miracles happen every day, and medical reluctance to admit to really good things happening unexpectedly just makes it seem all the more miraculous. So by its very denial, medicine contributes to the belief in “miracles,” yet it’s apparently blind to this.
I’m going to rein myself in on this one, because as I discussed earlier in my response to Myth #1 (the Myth of “Recovery”), I categorically reject the idea that recovery is not possible for people with traumatic brain injury. First of all, the definition of “recovery” is far too limited, in the way it appears to be used by Lezak, et al., to really constitute real recovery. They seem to equate “recovery” with returning to exactly how you were before your injury. But “recovery” can mean a whole lot of different things, and in fact, I like to use the term in the same sense that my friends who are recovering addicts or alcoholics use it. It’s not about going back to how you were exactly before your injury. It’s about recovering your functionality, your dignity, your ability to cope and grow and change, to be a full person living a full life. Anyone who denies that to a TBI survivor is worse than cruel. They’re also a little dense, and not to be trusted with true recovery, as far as I’m concerned.
Belief in this myth often takes the form of “doctor hopping” or “program hunting.” Families will put the head injured person through every available program or with every available therapist. Despite any tangible signs of improvement, many will continue to believe that if only they could find the right person or right approach, everything would be better.
BB: Okay, let’s hold on just a moment, here. “Doctor hopping” or “program hunting”? How is it wrong to continuously seek out the best care possible for someone you love and care for? Referring in such a derisive manner to a person’s quest for quality care in the midst of a totally f’ed up medical system that can’t even agree on proper standards of diagnosis and care for TBI survivors, is not only pompous and self-serving, but also dangerously dismissive.
I could have been accused of “doctor hopping” prior to my diagnosis and rehab, because nobody I went to seemed to have a clue, and nobody seemed willing to actually help me — or even tell me exactly what was going on with me. They asked me about my mental/emotional health. They asked me about my relationship with my parents. They asked me when the last time was that I took drugs. They came up with snap diagnoses, from “Meniere’s disease,” to repressed childhood trauma, to not getting enough sleep, to playing music too loud. They asked me a few questions, came up with a quick answer, wrote me a prescription or gave me a specialist’s name, and sent me on my way. But could they stop and listen and take some time to actually consider the whole of my situation in a logical and considered manner? Nope. I guess I didn’t have enough billable conditions. Or they thought I was just looking for attention. Or drugs. Or they thought I was crazy. I stopped looking for help from doctors, when I realized that they were on track to have me put under psychiatric observation and shoot me up with pharmaceuticals to make me more manageable.
Of course it is true that often head injured patients make significant gains only when hooked up to a competent therapist or top notch program, but that is not what is meant by the myth. Families who believe in this myth cling to the most unrealistic expectations when it is evident to everyone but them that their loved one has limitations which are not going away.
BB: Really? “Only when hooked up to a competent therapist or top notch program”? It can happen that you can make significant gains if you’re connected with someone like that. But other people who do NOT get proper care do make gains. It can be tremendously difficult and painstaking and full of needless suffering, but there is such a thing as self-directed, even spontaneous recovery. The medical industry seems to have pretty much organized itself around denying that this can happen… and only when they start to lose money, and then figure out how they can “integrate their findings” with the very facts they dismissed before, do they start to get with the program. Of course, by then, it’s way too late for a lot of people.
One of the other things that’s maddening about this is that it’s been my experience that people need to have information to go on, and when they can’t get information from a doctor or other healthcare provider, they turn to other sources. Like their faith. Like the internet. Like someone they talked to who had stories of miracles. Like actual accounts of miracles. If anything, it seems to me that the medical establishment only encourages people to look to the fantastical sides of life, by not providing the information that people actually require to make logical connections of their own.
I do “get” that some families will cling to completely unrealistic hopes, and that must be frustrating for lots of rehab people. But how much of that is fed by reticent doctors and specialists who won’t actually talk to them about what they know and what the family can expect? Acknowledging that patients and their families are in fact human and deserve the respect and dignity of a real response to their situation could go a long way towards addressing the gaps that are filled in by the miraculous.
TBI is like a black box in medicine, and terribly few professionals actually seem willing to discuss it openly and frankly. It’s a combination of the medical system, I think, along with doctors just not knowing enough — or being sure of things that are flat-out wrong.
The solution lies not in finding the right “cure”, but in helping patients and families become aware of and accepting the limitations and developing new goals and expectations.
BB: As Charlie Brown would say, “Aaaauuuuuugggggghhhh!”
This just makes me crazy. “The solution lies in … ‘helping’ patients and families become aware of and accepting the limitations”? Dude, WTF?! Seriously. I mean, I get that we change after brain injury, but we change just when we live our lives. It’s simple human nature. None of us are the same from year to year, and we don’t talk about our changing personalities and priorities and abilities and goals in terms of “limitations”. Sure, there may be changes — sometimes extreme ones — but calling them all “limitations” is insulting and denies the truth of the whole of human experience.
And in any case, whatever happened to the whole neuroplasticity thing? Seriously folks, we come into this world blank slates who are formed and educated and shaped by the world, and our ability to grow and learn and change never goes away — unless we let it. We have so much more ability to learn and change and grow, than many of us expect or realize. And if we approach our recovery like we would approach re-raising a child (in this case, the kid is us), we may find ourselves encountering many of the same issues that we saw when we were younger. Now we’re older and a lot of our cluelessness makes no sense (to us as well as you) so it can be confounding. But folks, let’s think about this in terms of re-learning and re-teaching and not just give up.
Oh, no — never ever give up.
Thank heavens I didn’t give up on reading, three years ago, when I was having a hell of a time remembering what was paragraphs from one page to the next. Thank God I didn’t just quit reading altogether. I thought I was going to have to, but then I decided I was going to train myself to read again. I could do it before. I learned how to do it when I was a kid, so why not follow the same kind of process that I did when I was little, to teach myself again as an adult? Why the hell not? That’s what I did — I started out reading things that I may or may not have understood, but which were fun to scan and run my eyes across. Then I started reading adventure books — spy novels and such — because they held my attention. They didn’t always make sense, and I didn’t finish any that I started, but at least I got going a little bit. Then I “graduated” to other kinds of books about things that interested me – Samurais and zen masters. And I’m not back at a point where I can actually read an entire book. It’s taken me a few years, and it’s been very disheartening at times, but I did manage to do it.
Not being able to read was a pretty obvious hardship for me, years ago. But it was not a limitation that I was willing or able to accept, so I fixed it. And the thought that tons of TBI survivors can also be capable of re-learning necessary and needed behaviors, because it’s more “realistic” — it just makes my blood boil.
What a tremendous waste of human capability and potential. It’s heart-breaking. And the people who are promulgating this mindset are “experts” who are looked to by their peers and lots of other people for guidance, direction, etc.
Like Charlie Brown says, “Aaugh!”
Why shouldn’t we have miracles? Why shouldn’t we have hope? What gives anyone the right to steal away our hope? What gives anyone the right to kill our spirits, in the interest of “protecting” us? It makes no sense.
Unless… you consider that the people who are encouraging us to scale back our expectations are A) not very smart, outside of their chosen fields, B) not very experienced in life outside the laboratory, C) not willing to put in the work to help us recover, D) not able to bill insurance companies for the extended time it takes to help us, E) too accustomed to thinking inside their little boxes to consider alternatives, F) very invested in defending their positions because they’ve built a reputation on them, etc.
There are many reasons to cave into the pressure of seemingly insurmountable TBI difficulties. If the experts want to give up and go off and sip umbrella drinks on a beach instead of helping us, then let them. But they have no right to deprive us of our hope.
Screw ’em. I’ll design my own damn’ recovery, thank you very much.
And on that note, I’m off to continue my day. Time for lunch.