TBI recovery in mind and body

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s best that I just steer clear.

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

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

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

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

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

Is that so much to ask?