When understanding keeps its distance

On the outside, not even looking in

One thing that has been a consistent problem with me for many years, is understanding what people are saying and being able to hold a reasonable conversation that I could then remember later. Yesterday someone found their way to this blog by searching for an answer to why their brain injury makes it hard for them to understand what’s happening on t.v.

I kind of glossed over it — I was tired and I was running out of steam. But now luka wrote something in the comments that really summed up a lot of things I was unable to think of or put into words, yesterday. His words are in bold.

This difficulty in trying to understand what people are saying has been one of the hardest things for me to handle. There came a time I wanted only to be in another culture, so I’d have an excuse for just not “getting it”. Now I’m with my roots and I feel their hidden disdain for my existence. And I’m not running. I’m too tired and too old now. They’re stuck with this smart, retarted man. And I will take to isolation more and more, but I won’t be out sight out mind. But communication at times baffles me much more than one could tell. Well, not sure if it’s denial or pride, but I think for the most part it has been an area that has bewildered me. It’s that it fluctuates some and in my compensation and extreme need to focus and to remember, I can, at times, be more aware than anyone about what is being communicated. The problem is that there is usually a lag time. And in mid flight I’m stuck on details and snippets in the conversation that makes me miss much meaning that gives life meaning to our social species.

I can relate to what he says on so many levels. The lag time when people are talking to me… feeling like I have to constantly scramble to keep up — either working overtime to stay engaged in the conversation, or simply recall what someone said to me a few minutes ago. A lot of the time, it’s gone — for good — and I have to make it up as I go along, but I don’t have the energy to keep track of everything, write it all down, and sort things out in my head. So, as often as not, I just go along and pretend I know what’s happening.

I struggled with this for a long time — feeling stupid, feeling retarded, feeling lame. And I tried to address it with my neuropsych, who has really helped me to figure out how to hold a conversation. Now I can converse with people and be witty and whatnot. The only thing is, I’m still lagging. I still have the processing delay. My most recent test results show that my speed of information processing has NOT improved in the past 8 years. I’m two standard deviations below what would be expected of me, given my overall intelligence.

So, I’m literally not making it up. It’s not something I’ve concocted in my head to feel badly about myself or come up with a reason to get pity. It’s a thing. It’s a real, genuine thing. And the fact that my neuropsych keeps downplaying my irritation with it, just adds to the difficulty.

So, I have effectively learned how to make do in conversations with my neuropsych. I’ve learned how to fake it even better than before. I can hold my own pretty well and conduct a conversation, and I am even comfortable now, saying, “I don’t understand — can you please repeat what you just said?” I never, ever did that before, because I was too busy trying to keep up to stop the conversation to get clear on something that was lost along the way.

It’s not genuine improvement — it’s functional improvement. That means to me, I can function better, I look better to other people, and I have better outcomes from interactions with people. But I’m still in the dark. I’m still struggling. I just don’t show it.

The most painful thing, is that my neuropsych flatly refuses to believe that I still struggle with this. They seem to believe that by telling myself I’m fully functional and can do anything I can put my mind to, I can achieve the world. Or at least a significant part of it. They can be very strange that way, like someone who’s bought into a whole Great American Mythology of Anything Is Possible If You Just Try Hard Enough.

I hate it when people who should know better, fall prey to their own mythology. My neuropsych believes (truly) that you can make yourself into whoever and whatever you want to be, and if your experience isn’t turning out how you’d like it, you just change your definition of what constitutes a good experience, and voila — you’re a success. I’ll spare you my rant on that. It’s just a distraction.

I’ve actually been trying to speed up my processing, I’ve been trying to work on my distractability, I’ve been trying to strengthen those areas where I have demonstrated problems. But years into my rehab, five of the six areas of significant difficulty remain unchanged.

At least, that’s how it was in 2013. I may have actually improved since then.

Anyway, yeah, there’s the whole thing about people seeing your innate intelligence and then not understanding why you’re so stupid at times… that’s all too familiar. The sidelong glances when you say something unexpected… the subtle (and not-so-subtle) hints… the teasing that has a nasty edge to it… I understand why people do that. It’s because it makes them uncomfortable, and it’s not consistent with their image of who you are and how you should be.

People are neurologically and biochemically invested in us being a certain way — it tells them how they should be around us, which stimulates certain neuro and biochemical pathways. How we are, makes others who they are. And when we are “not who they think we are” in predictable ways, it’s an existential threat. So, they feel endangered. And they lash out at us without even knowing it. We frighten them — Simply by being different from what they expect. And they feel the need to defend themselves and their understandings of who they themselves are.

But even if I understand why people are this way, I am so sick of it. I’ve been sick of it for over 40 years. I’m just about to turn 50, and I started having TBIs when I was 7 years old — probably even before that. Heck, I might have had an anoxic brain injury when my mother left me in the care of a neighbor kid who was “special” and put a clothespin on my nose to see what would happen. (I’m swearing in my head, but I won’t write what I’m thinking.) People have been really unkind to me for a long, long time, because of TBI-induced irregularities in my behavior and performance, and even to this day, the spotty nature of my abilities makes me absolutely nuts.

Luka continues:

Many people have told me that I had autism, but over the years, I am more convinced that it was the result of traumatic brain injuries. Some have said that they see it as absence siezures. And the psychologists see it as dissociation. People point to all that I accomplished in the world’s terms. As if it is proof I should see the last 25 years as a success. They point to pictures when I am smiling. And point out that I am “witty” and that wit takes intelligence. I feel dumb as I struggle to get around their idioms and block out sensory stimuli.

And in the past, I, too, was told I was on the Autistic spectrum — people who met me for the first time would actually tell me that it was okay if I was autistic. I didn’t need to be ashamed of it.

Huh.

For a while, I was under the impression I’m an “Aspie” with Asperger’s Syndrome. It’s not a stretch — many of my family really look like they’re on the spectrum, and I’ve got nephews who could be quickly taken for Aspies. After much research into the nature of Asperger’s Syndrome and autistic spectrum (AS) issues, I realize how much TBI folks have in common with them. Sensory issues are a major component of the AS, and they are certainly an issue for brain-injured folks. The ticks and the soothing and the behaviors that I exhibited in the past, when my sensory issues were unacknowledged and unaddressed (See The Deepest Day) were very much like autistic behavior.

But they stemmed from another source. Once I learned what that was, and how to address it, a lot of that resolved.

I also in private and on many nights, wish that I did not wake up December 1991. I see my life as a complete flop. All my dreams passed me by. They see me as having lived the good life and wasteing my God given talents. Just a squanderer who needed a kick in the ass. I see myself as someone who needed much patience and understanding and encouragement. But one who got that from a special few docs and friends and in the end my precious daughter knows truth of her father who so many told her was crap, but I can’t say people and docs didn’t try; many did but the end, they grew weary and the very best one, discarded me. And down deep I gave up the medical scene. Doctors’ offices are now triggers for ptsd. How sad given all they did do for me even if they diagnosed me wrong. I’m finally saying screw everyone who looks at me as a failure or a nut case. I’m taking a little empathy that I bring to others and going to start giving it to me. I’m 52 and shunned by many. Behind my invisible injuries, seen as con games or character flaws, is a person whose not just had dreams shattered twenty-five years ago, but stopped knowing what I had dreamt of. What constantly hurts me is that I almost pulled it off. At age 39, while on lamictal, I had started to see how far I’d come and started to have live dreams for me. I even learned what “love” in the romantic sense could be as I knew it before 1991. But in early 2000’s I had another brain injury and now I feel that it’s too little too late. And I don’t have much energy to pretend anymore.

Amen to that, for sure. All my dreams seem to have dissipated… though I’m still working on them and still have hope. I’m pretty bummed, though, that I’ve lost so many years to this injury — years I will never get back. Along the way, I have had some help from people who were genuinely compassionate. But one by one, they all lost patience with me. As though their compassion were conditional and intended to gently but firmly bring me through to the other side, where I would start living up to my true potential.

Yah. That was never going to happen. None of them knew sh*t about TBI, none of them knew sh*t about the brain. And a part of me says “screw them all” with a bitter sneer, because their compassion just turned out to be fake.

One after another… concussion after concussion, TBI after TBI… one bad choice after another. But I’m still here. So yeah, screw them.

But as disappointed I am with my life, I do think that I have a responsibility to use the compassion gained by losing my identity to siezure epileptus/coma state. Compassion and empathy are so desperately needed in these times. I cannot waste these byproducts of TBI and PTSD. Aside from the high level anxiety and depression, I feel very brave and strong in a way that I never gave myself credit for and with others yelling in my ear to “wake up” or “schizo” and me not even getting that, but knowing on some level I was the scorn of those around me. Maybe that is an added bonus of surviving, I know the truth and it is good enough for me. I will die knowing I did my best when they thought I was squandering. God bless.

And here is the key — the gold at the bottom of the bucket of mud — compassion and empathy and the ability to reach out to others and help. All the experts in the world are not going to make the world a better place, a more compassionate place, a better informed place. That can only happen through the efforts of everyone “on the ground” who is in the trenches of human experience, day in and day out. I, too, feel a responsibility to use the compassion I’ve gained — and yes, is so desperately needed. I can still contribute, in my “partial-ized” state… my many-times-fractured, many-times-healed state of mind and body.

I too have known what it’s like to have people yelling “wake up” and “crazy” in my ear — so loud, it was painful. People close to me, who were supposed to love me. People who were supposed to be my friends. And I also know what it’s like to not get that — it was just yelling to me, and it took me a little while to figure out what they were really saying, and why.

Yelling at someone who lives with a brain injury will literally not do any good (so why do people do it?).

In the end, it’s the truth that matters. The truth of our experience, the trust we have for ourselves. Finding the value in our difficulties, and offering a helping hand to others. These days, we have greater ability than ever before, to make a positive difference in the world, and even if we think we can’t — I can promise you that you really can. Every interaction we have with others gives us a chance to make a positive difference of some kind. It may only be inside our own heads. It may even be a “fabulous fake”. But so long as we don’t cause harm to others or ourselves, there is always a chance that our words and our work will matter in ways that we never fully understand.

And with that, I wish you a very happy Friday. Thank you luka for sharing what you wrote.

Be well, each and every one of you.

Onward

The road will be long – and surprising things will happen

So, I had a good appointment with my new neuro.

Headaches = migraines. Confirmed.

MRI coming up… partly to check on that pineal cyst that was discovered back in 2009. Everyone has assured me it’s no biggie. Tons of people have them. MRI with contrast. Get ready. Last time, I got a little sick from it. So long as I know ahead of time, I can prepare.

Thought everything was going well. Then got a call from the dr.’s office. Apparently, my insurance company told them that my coverage was terminated on March 1 – two months ago.

Surprise.

And not at all true. Premiums have been deducted from my account like clockwork, and I have coverage till the end of November.

Paperwork.

Huh.

So, after a few harried phone calls, I got people back on track. Not at all true. I do have coverage.

So there.

Onward.

Getting new doctors

The tremors in my right thumb and hand have been getting more noticeable, lately. The numbness and tingling on the left side of my face has continued,and it’s now just a part of my day-to-day.

And the neuro I was referred to, has not managed to get their insurance situation sorted out. I have been waiting for three months for them to get their act together, and still it hasn’t happened.

Do I feel comfortable turning over my neurological healthcare to someone who is resigned to let red tape block them from practicing?

No.

What will happen if I am in real need of specific types of care, and they cannot get their act together to provide the help I need? What then?

So, I need to find a neuro who can check me out for this tremor business.

And I also need to find a new PCP. The one I’ve been seeing has been good for getting me basically squared away, but they have been really lax with some things and have not followed up with as much engagement as I would like.

It’s not like I’m sick a lot, but when things do go wrong, I need to know I can count on someone to be all there — 100%. It’s my health and well-being. I don’t think it’s too much to ask.

But first things first. It’s pretty overwhelming for me to find a neuro, and the anxiety around getting a new PCP is pretty intense for me. So, one thing at a time.

When I do start talking to doctors, I’m going to take a piece of paper to them that tells them what my goals for care are,and how I need them to help me get there. I have no guarantee that they’re going to ask that, themselves, but that doesn’t need to keep me from discussing my intentions with them.

And keeping it simple and straightforward is the way to go. Even if it completely oversimplifies everything. First I need to get an “in” with them. Don’t overwhelm them before they have a chance to get to know me. When I deluge them with all my concerns, I come across sounding like a bit of a hypochondriac, because who the hell could walk around feeling like I do, being as functional as I am with so many issues?

Or maybe the issues are all in my head, and I’m malingering… looking for attention.  Whining and bitching and being a little cry-baby.

Whatever.

Actually, all I really want from a doctor at this point is some diagnostics to make sure the tremor and numbness in my face isn’t something bigger and badder than it seems to be. I just don’t like getting “caught out”. I want to get a head start, if at all possible, and get ahead of my issues before they get the best of me. I’ve lost too much time to “wait and see” approaches.

Time to get moving. Tomorrow I start calling around again.

Onward.

Doctor visit tomorrow

I have my annual physical tomorrow. I had an early dinner, because I have to fast for the bloodwork. I can have some black coffee in the morning. That is it. None of my rocket fuel – just black coffee, with no sugar (which I don’t use anyway).

It will be interesting to see how my bloodwork comes back. I have been eating less red meat and drinking a lot of butter coffee. I’ve been consuming a lot of butter. We’ll see how that goes with my cholesterol and triglycerides.

It’s a beautiful night tonight. My spouse is away on a business trip, and I have the next three days to do just as I please. I’m going to hang out at the library tomorrow afternoon, after I am done at the doctor’s office.  After that, I see my neuropsych, and then I am going to see an independent film, which my spouse would not be interested in seeing.

I’m going to enjoy myself.

But for tonight, I am going to take my shower and go to bed early. And get up early for my physical. It’s all good.

Onward.

Help for a racing heart rate

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.

Here it is: How I slow down my heart rate (click here to download)

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.

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.

When things don’t go as planned

Sometimes there’s high seas ahead – oil painting by Joyce Ortner – click to see her gallery

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.

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.

TBI? S-O-L

I once talked to someone about a brain injury support group that kept a list of all the neurologists and physiatrists and psychologists and other medical and mental health providers in their area, who consulted for insurance companies regarding TBI survivors.  They offered this list to people who sustained TBI, to keep them from walking into a trap, because these people offered to “help” but only helped the insurance companies disqualify them from receiving coverage for needed care.

They also included on the list any doctors and others they knew of, who were helpful and who “got it” about TBI. This was to guide people in choosing healthcare providers who could actually help, instead of sitting there and looking at you like you had two heads… and then prescribing some medication that would totally mess you up.

Seriously, medical and mental health professionals who don’t know about TBI are bad enough. But those who use their position and expertise to deny care to those who need it, are another breed of human being entirely. It kind of boggles the mind, at how eager some folks are to “defend” large institutions against “exploitation” by individuals who have been injured and are some of the most vulnerable folks around. But I suppose there’s a reason for everything.

Anyway, I come across situations all the time, where people are denied help from insurance companies or doctors or other providers, because of some technicality or some bias. It’s maddening, especially when it seems so obvious that there is definite need involved, and people are hurting. But it constantly happens. To our vets. To professional football and hockey players and pro wrestlers… to MMA fighters… to first responders and stuntpeople… to kids in school and adults in cars. All the time, people get hurt, and then they need help. But the ones who are in a position to help… well, just don’t. And they hire professionals to make sure they don’t have to help.

Me? I’ve just lived my life a little too actively, I guess. I got hurt a bunch of times when I was a kid, and I’m sure that didn’t help my judgment and my co-ordination over the years. In many ways, my early life “set me up” for later injury, and in times when I am tired and don’t have the strength to do better, I really feel sorry for myself and my sad lot in life. It really isn’t fair, that I fell when I was in child care as a young kid. It really isn’t fair, that I fell down the stairs when I was 7. It really isn’t fair that I was attacked when I was 8, because some kids didn’t like the looks of me. And all the rest that came after… well, sh*t. It generally sucks. It also sucks, that I haven’t been able to get any help at all for any of this, until three years ago — and that was just by chance.

And here I am. Or, maybe I should say but here I am — ’cause I am.

The world keeps spinning without taking me into consideration, but I’m still attached to the planet. The world keeps rolling right along, and it’s on me to keep up with it. On days like today, I feel totally fine with that. But most days, I have to say I resent it a little bit. Because things shouldn’t be as hard as they are for me — the simple things should be simple, the fun things should be fun. I shouldn’t have to work as damned hard as I have to. And I shouldn’t have to be surrounded by people who don’t understand what a chore it can all be for me, at times.

Really, truly, I do feel like someone should know… someone should care.

But that’s a wish for an alternate universe. Tons of people are suffering and in pain each and every day, and there’s not a damned thing I can do for them, other than just acknowledge how much pain they’re in, and try to do my part to cause less suffering for others in the world. I wish to god I could solve a lot of this and make it better, but between dumb luck, off chance, willful endangerment and exploitation, ignorance, and greed, it seems the world has us by the short curlies and isn’t going to let go anytime soon.

So, I just live my life. I’m not happy about a lot of crap that goes on, and some of it I’d just love to make right — don a cape and charge out into the world to set things right. But with my luck, I’d end up on the business end of a cross-town bus ;)  All I can really do, in most cases, is do the best I can with what I have. And hope that others are doing the same.

TBI can be a real bitch. But then, so can many other things. And it does me no good to focus on how screwed I am by my situation. I just have to keep looking up, keep focused on the positive, and do what I can with what I have. ‘Cause you never know… it might not all be that bad, after all…

Then again, it might.

But I’d rather not reach any conclusions until I have all the facts — and that’s not something that’s going to happen anytime soon… or probably ever.

So, onward. There are better things than my lot in life, yes. But there are also worse things.

Getting MTBI diagnosed sooner for better medical outcomes

I’ve been reading more this article: Mild traumatic brain injury in persons with multiple trauma: the problem of delayed diagnosis and I’ve been thinking about why MTBI tends to be overlooked by doctors treating folks with multiple injuries (multi-trauma).  I’ve also been thinking about what benefits might come from diagnosing a mild traumatic brain injury along with other injuries.

I hear it time and time again – from people who read this blog, to people who post on forums, to people who post to comments on websites about mild traumatic brain injury – they got hurt, but the doctors didn’t pay any attention to the TBI issues they were having. This is especially true of veterans who return with a host of issues, with their physical injuries taking precedence.

Obviously, it’s easier to assess and understand physical injuries like broken bones and torn muscles. You can see them, you can measure them, you can tell when they’re healing and measure how well they’re being repaired. But the treatment of these injuries is just the first part, and long-term it seems to me that diagnosis and treatment of any brain-related issues goes hand-in-hand with the treatment of bodily injury.

Because one of the keys to a good recovery is compliance with doctors’ orders. And compliance can depend on a number of things

  • first of all, understanding what the doctor(s) said,
  • secondly, understanding the need for following instructions, and
  • thirdly, having the capacity for following those orders independently over the long term.

If the brain has been injured, it undermines you in at least three ways:

  • First of all, it can make it hard to understand what the doctor(s) said, and (perhaps worse) it can make it hard to know that you didn’t understand. You can’t very well ask for clarification, if you don’t realize you need it. And when you have TBI issues around organizing your thoughts and making yourself understood, it complicates that very critical first step of comprehending what your doctor is telling you about what’s wrong, what you need to do, and what you can (or cannot) expect to happen as a result of your treatment.
  • Secondly, TBI can undermine your ability to understand the need for following instructions. If you don’t understand why you need to follow the doctor’s orders, the chance of motivation is a whole lot less than when you know why you should do what they’ve told you to. Compliance with doctor’s orders is notoriously difficult, and a lot of people just don’t do it, even when they do understand everything that’s been said to them. Take away that ease of understanding, and you’re further complicating an already challenging situation.
  • Thirdly, TBI can reduce your capacity for following those orders independently over the long term. This can be cognitive or energetic. If you’ve got big problems with fatigue and confusion and organizing your thoughts, and your entire life becomes a trial, day in and day out, and you have your hands full, just doing the stuff you’re familiar with, what are the chances of you going above and beyond to take on extra-ordinary activities to further your healing? The issues you have at the outset may continue unabated — even worsened — over time. And even if you start out fully compliant, if you don’t have the ability to sustain your efforts, your long-term recovery can be dramatically impacted. For too many TBI survivors, life can be so draining and confusing that even the most basic of activities leave them exhausted and depleted, frustrated and agitated, and them have no energy left to go above and beyond. So, long-term maintenance — or choices for extended recovery — can fall prey to that dynamic.

Personally, I’d like to see doctors be better educated about TBI in general — especially because of these issues which can directly impact not only quality of care but quality of outcomes. Improving outcomes is everyone’s desire, so why not address these issues from the get-go, and help patients gain a better understanding of their total situation, so they can take appropriate steps to offset the effects of a brain injury?

Part of the problem, that I can see, is a dearth of medical knowledge about mild traumatic brain injury. It’s not difficult to find research on severe or even moderate brain injury, especially where there was some external injury. That’s quantifiable, it’s measurable, and it graphs well. You can track it. With mild TBI and/or closed head injury, when results don’t show up on the CT scan or other imaging/diagnostic mechanism, you’ve got a conundrum. And when the doctor in question doesn’t have the perspective of pre-morbid (before the injury) behaviors and experiences, how can they actually tell that something has happened that is out of the ordinary?

Medicine as we now know it isn’t particularly well suited to recognizing and addressing mTBI, and in failing to do so, the quality of care — the possibility of quality of care — can be pretty strongly diminished.

Which is a shame. Because nobody wants to pour all their time and energy down a gaping black hole. But by ignoring mild traumatic brain injury in multi-trauma situations, by the force of sheer ignorance, that’s exactly what people are helping to make possible.

So, what can be done about this?

  • Well, education helps, for starters. An understanding of the actual impact of mild traumatic brain injury on cognition (I’m not talking about IQ, which is a completely separate issue), mood, behavior, and willingness to engage with the world, may help.
  • Also, making education a priority not only for doctors but also patients is a good step. Making sure patients and their caregivers understand that certain things may be happening — confusion, depression, irritability, anxiety, agitation, disrupted sleep, and a whole lot of other things that tend to get chalked up to psychological states — may help ease some of the uncertainty and agitation that often complicates the situation, and makes a tough spot even worse.
  • Knowing what you can do about these symptoms can also help. It gives you a greater sense of control and hope. Initially, rest is critical. Being smart about taking it easy and having good medical help is also good. And understanding that rest is not a punishment, but an important part of recovery, can also be helpful.
  • For physicians, it may be a challenge to not have a pharmaceutical solution for concussion/mtbi, but this just highlights the importance of addressing patient mtbi issues — you can’t give them a pill to fix it, you need to rely on their cooperation and compliance to improve outcomes. And that means addressing their brain injury issues in a constructive and supportive way. This may be a departure from how things are done for many, but I really feel it’s worth the effort.

One blog post isn’t likely to change much, I realize, but if one person in medicine reads this and takes a slightly different approach that factors in TBI when treating multi-trauma, so much the better.