So what if it’s awful? That will change. No doubt.

The past couple of weeks have been pretty rough for me. Oh, hell, the past few months have been intense. Family issues, relationship issues, work issues. The whole gamut. And I’ve been feeling like crap, for the most part.

Pretty awful.

So what? It will change. I will change it. And that change starts with me actively amping up my responses to the events of my life in ways that I choose, and that suit me best.

One of the life-changing developments of my life, in the past while, has been using my 90-second clearing to take the edge off my anxiety, anger, fear, adrenaline rush. I learned about how stopping and breathing slowly will stop the downward slide and it gives me a chance to let the stress biochemicals in my system clear out – replaced by ones that are better suited to thinking things through in a rational and adult manner, instead of like the crazy person I can quickly become when I’m pushed too far.

I’ve been doing this 90-second activity for a couple of weeks, now, and it’s pretty amazing. And it shows me — up close and personal — how even in my most frantic state, I can get myself back to some balance. I don’t have to teeter on the brink of madness. I can take a bunch of slow breaths, step back, and turn around and head in a completely different direction.

Which is good.

It puts things in a whole new light. Because now, not only do I know that I can get myself back to feeling human again, but that generalizes to other parts of my life, and I can see how things can change so quickly. For the better. Or, even if they don’t get better, at least I can feel better, and when I feel better, I think better, and things can be improved.

Maybe not overnight, but I can at least make a start…. or, to be more accurate, make another start.

Some days it feels like I’m starting from scratch every single day. It’s weird — and a little wonderful at the same time. I believe it has to do with my working memory issues. I just don’t retain things really close to the surface of my memory — I have to revisit over an extended period of time, preferably with someone in the room. That’s where my neuropsych has come in, for the past four years or so — they’re someone I have checked in with regularly, once a week, to review my progress and keep me on track.

Well, money is short these days, and my copay went up, so I can no longer afford to see them every single week. I’ve switched to every other week. This is — again — weird and wonderful. On the one hand, I feel like an important support for my life has been removed; on the other, I feel like this is an important step for me, to be able to be more independent and draw on my own resources. I cleared out a bunch of old papers from my bookshelves this morning, and I found a lot of notes from my past sessions, and it’s remarkable how much progress I have made. Seriously, I have come a very long way, and I need to give myself credit for that.

Reading those notes is a little disconcerting — I can see how diminished I was, how limited I was letting myself be. But it’s also encouraging, because I’m not that person anymore. Not by a long shot. I think about how hard things were for me, once upon a time, and how awful they were, and I can see how much things have changed. So that is good. And it is encouraging.

The tough times I’m having right now are partly “withdrawal” from my weekly sessions, which have been safety valve for me. I’m adjusting and adapting and coming up with my own ways of releasing pressure and getting my bearings. It’s not easy. It’s very painful and confusing and fear-inducing. But so what? This will change. With practice and concerted effort, it will change. The tough times are also due to some real difficulties I’m having with my environment — and I know it’s not just me. I know it’s not just my attitude. The situations I’m in really do suck — by design by forces driving towards short-term maximum profitability, with long-term detriment to everyone involved. I have been stuck in this short-term frantic hell-hole of a workplace for almost three years, now, and it’s time to go. It just sucks so awfully, and I am simply accepting that as how things are — with a view towards changing it in just a few months.

These are all adjustments. Difficult adjustments. Problems with integration and assimilation — which should be problems, because when sh*t is f*cked up, well… sh*t truly is f*cked up. And there is no logical reason a person should stay in that situation, try to adapt to it, make it feel better, etc. I’m invoking Kasimierz Dabrowski now, who was a Polish psychiatrist who survived the Nazi and Stalinist eras and developed his Theory of Positive Dis-Integration (the “-” is mine in “Dis-Integration” because without it, the word to me means “dissolution” or “falling apart” in an internal sense, which doesn’t mean anything good to me). This theory states that people with high personal development potential, who are able to develop their own identities independent of the crowd, will necessarily go through some dark nights of the soul, as they develop and realize that they really don’t fit in with the crowd, and indeed they should not.

This dark night that people experience is often diagnoses as a form of depression which should be treated – or it’s seen as a disease that has to be cured. Our standard-issue popular response to people who don’t fit in and don’t cotton to the pressures of the “normal” world, is to pathologize and/or medicate and/or institutionalize this state of mind, rather than working through it and seeing it as a sign that there is something more this person can — and should — be experiencing in their life.

That’s kind of where I’ve been for the past while — being keenly aware of how effed up things are around me, seeing the part that I’ve played in making all that possible — how I’ve enabled people to screw me over… how I’ve undercut myself with poor habits and lack of discipline… and most of all how I’ve numbed myself to the raw facts of things not being as they could be, simply by “changing my perspective” and looking at things from an angle that allowed me to make them all right, while ignoring the angles that showed that things were anything but right… and of course seeing how not managing my TBI symptoms and after-effects has made me a lot less effective and with-it than I could have been all along.

Probably the hardest thing to stomach has been realizing how I’ve made things harder for myself, by zoning out in a state of bliss that blocks out any pain or discomfort. I’ve been able to put myself in a state of bliss — total physical, mental, spiritual ecstasy — for many years, now, and I’ve been using that to dull the pain that comes from my everyday life. I also know how to direct my focus to one thing — and one thing only — effectively blinding myself to the troubles at hand. Because I’ve been able to do this — total focus and ecstasy without drugs — I’ve been able to keep myself from falling apart. But I’ve also been keeping myself from coming in full contact with my life and seeing clearly what needs to change.

I’ve been in a lot of pain for a long time, and I’ve managed to find a way to get my own relief. At the same time, that ability to cut the pain and block it all out has held me back from making the kind of progress I really need to make.

Now, don’t get me wrong. I do think that things have been so intense and potentially overwhelming that I have HAD to block them out and dull them. I fall apart over little things way to easily, and I have to stay functional. It’s been useful. And I do think that after the years of teetering on the brink of collapse, post-TBI, I needed to normalize and get to stable footing, which is where I am now.

So, in a way, this pain and discomfort is a good thing. It’s a sign that I’m ready to head to the next level and do some more great work, refashion my life, and do away with the things that keep me from living the life of my design. When I can sense the pain, I can take action and move away from it, thus living up to my potential. But when I cannot sense pain, well, I’m destined to be stuck with it for as long as I can tolerate it. Intolerance is a good thing, no matter how awful it feels.

Yeah, I’m intensely discontent and I’m in pain. Good on me. It’s a positive sign that I’m alive and ready to do something different with my life. Do doubt.

Onward.

Hey, wait – maybe PCS isn’t a *real* problem?

Don't worry... be happy... right?

Just kidding — that’s my attempt at being facetious and draw attention to some of the absolute absurdity that the DSM-IV once again brings our way.

I’ve heard people talk about how DSM diagnostics are decided — apparently there’s a committee of powerful, politically connected psychiatry insiders who all get together in a room behind closed doors (literally) and bargain to see who gets to define which syndrome or disorder. Hmmmm… Sounds dicey to me.

And yet, their pronouncements rule the day. And they hold the keys to the castle with the insurance companies, as well as how we define and understand ourselves, based on “professional opinion”. Their little jockeying-for-position games behind closed doors can — and do — ruin lives. Not least by way of coming up with bogus definitions that clueless therapists and counselors and healthcare providers rely upon to conceptualize conditions and treatments.

My reading of the ONF guidelines for persistent mTBI symptoms has hit a speed bump. My initial enthusiasm has been quickly cooled — as it often is. I guess I had a bit of an impulse control problem, when I started reading their guidelines. I was so excited that someone had put together something comprehensive for healthcare providers, which actually focused on long-term issues of mild traumatic brain injury. Fortunately or not, my double-take happened pretty early on — around page 7, when they started to go on about DSM-IV diagnoses for PCS and PCD.

Apparently, PCS is a syndrome where you just *think* you’ve got a problem. There’s been no neuropsychological testing to prove it (though actually getting access to that testing can be all but impossible, and even when you do get tested, whether or not you get someone good is all too often a coin-toss).

Now PCD, that’s a real problem, being verified by neuropsychological testing and evidence of “significant impairment in social or occupational functioning”. My next question is, who gets to decide what constitutes “significant impairment”? If my post-TBI symptoms persist in making me utterly miserable for years after the fact, but I can still hold down a job and carry on a semblance of a conversation, does that mean I’m not really that bad off? (This really brings to the fore the need for real, solid, in-person education, like the “You Look Great” videos and book by John C Byler. Check them out, if you can — the YouTube videos, especially.)

What’s more, the DSM-IV PCD/PCS definitions talk about loss of consciousness being a requirement for concussion. Please take note, doctors and patients alike:

You Do Not Have To Lose Consciousness To Sustain A Concussion

A temporary disruption of consciousness will do just fine, thank you. Fogginess, dizziness, feeling out of it… that can indicate concussion, also.

Anyway, considering these guidelines from the ONF are intended for doctors who are diagnosing and treating concussion/mildTBI folks, this inclusion of DSM information really worries me. It’s so obviously slanted towards psychology, when traumatic brain injury’s nature is so physiological in nature. The separation between brain and body that the psych mainstream insists on maintaining is a little bit creepy, actually. Here are all these people walking around in bodies, living physical lives, dealing with people who have genuine physiological bases for their state of mind, and yet magically the body doesn’t matter. It’s like the psychiatric diagnosis-definers of the world have problems with their own physical realities, so they expect everyone else to be as divided and dismissive as they are.

How is it possible that a whole scientific field (though Sheldon from Big Bang Theory would probably dispute the scientific-ness of psychology/psychiatry) can discount half (or even more) of the human experience? It’s sad. And pretty awful that so many impaired people have so much power.

In shutting out the physical, they draw much of what they purport into question. Their guidelines and diagnoses patently discount a massive chunk of contributory information. How can you take them seriously, when they make claims that post-concussive issues are “subjective”? As though it’s all in our heads and we’re just looking for attention. And yet, they’re the ones making the rules and deciding whether or not we get care — and what kind we get. So, we have to take them seriously. As a heart attack.

It's all in your head

The DSM definition of PCS — which includes “Subjective concentration, memory, or intellectual difficulties without neuropsychological evidence of marked impairment” and “Preoccupation with above symptoms and fear of brain damage with hypochondriacal concern and adoption of sick role” has Münchausen syndrome written all over it, and seems to me to breed dismissal, neglect, and opens the door to a whole course of “treatment” for a psychological condition that doesn’t even exist.

Of course, it wouldn’t be the first time the psychiatric industry were playing fast and loose with other people’s lives, in hopes of getting people “back to normal”. Talk to historians (or check Google) about marginalized populations , like Native Americans, African-Americans, non-compliant women, gay people, and just about anybody who has been considered “abnormal” by mainstream society, and you’ll find generations of evidence of psychiatry being used to further the dominant paradigm, and decide who’s fit to belong and who’s not.

In the past couple of generations, with the rise of pharmaceutical “solutions” to mental health issues, psychiatry has been used tons of times to further the profits of big pharma, and their influence reaches into every aspect of our lives. It would seem at times as though psychiatry and psychology were just the vetting mechanisms to identify which drug should be prescribed — not if any drugs are really necessary at all.

And this is what gets me the most. Because if you’re saying that Post-Concussive Syndrome is a “subjective”, “hypochondriacal” psychological condition, and you reach for the prescription pad, you may very well be headed down the wrong path entirely. TBI makes a lot of people react completely opposite to drugs than the rest of the population, and it can make you intensely sensitive to even minor doses, which not a lot of people realize.

Another thing that worries me about including DSM stuff early in the ONF guidelines is that if docs read that up front, they could be led to think that, “Well, it’s not a REAL problem that I can address — it’s actually something that’s in their head and they’re better off seeing a counselor. Furthermore, if I allow this patient to entertain fantasies about their being sick, I’m just encouraging their malingering and rewarding their Münchausen syndrome. And I don’t want to do that.” And they may ship ’em off to psychiatrists who whip out that prescription pad and send their new charges straight to the fires of aggravated TBI symptoms – probably without even realizing it.

And off we go down the road to hell… With clueless doctors staying that way, and TBI survivors continuing to struggle and fall deeper and deeper into the hole of no-answers, no-options, no-hope.

Good God.

So, there’s my speed bump meditation for the day on the ONF guidelines. As always, with mild TBI, it’s caveat emptor, when it comes to getting good information. Buyer Beware — someone with either an agenda… or misplaced loyalties/trust… or a need to take shortcuts… or a sense of extreme urgency (or a combination of all of the above) might be playing fast and loose with the facts of the case, for their own gain and profit — not yours.

Which is why we survvrors and those who care about TBI survivors need to keep vigilant and guard ourselves against unmitigated nonesense. Fortunately (for me, anyway), my constant restlessness and TBI-enhanced anxiety and vigilance keeps me on my toes.

I just hope the same can be said for others.

Hey, wait – maybe TBI isn’t a *real* problem?

D’oh – sorry – I meant to say “PCS” not “TBI” — I’ve posted this under the proper title.

Hey, wait – maybe PCS isn’t a *real* problem?

Click here to go there now >>

What if we all just… WERE?

Source: http://www.myspace.com/psychiatrypsucks

I had an interesting conversation with some acquaintances a few days back. For some reason, I ended up sitting at a table with a couple of folks who were lugging around diagnoses of ADD, like so much luggage they had to schlepp around an airport, in perpetual search of a flight that kept changing gates.

One of them embraced their ADD diagnosis with forced gusto, essentially turning the baggage into heavy Luis Vuitton satchels with special locks on all the latches. They proudly proclaimed that they were a “ready-shoot-aim” kind of person, who took things as they came… and proceeded to also comment that for all the balls they have in the air at any given time, they didn’t actually get much done.

Another of them sat silently as we discussed distractability and attention issues and what it’s like to live in today’s world. Not to be dragged down by any ADD/ADHD diagnostic belaborment, I proposed the idea that in today’s world, with all the things that are constantly thrown at us… if we have any interest at all in life, and if we are really invested in what happens to us and the world around us, we darned well sure are going to get “distracted” on a pretty regular basis.

I mean, if you give a damn about what’s going on around you, and if you have a deep and abiding interest in your surroundings, and your surroundings change and evolve, how can you not pay attention to shifting things?

“If you’re really, really alive,” I proposed, “you’re going to be prone to be distracted.”

The one with the “expensive luggage” just looked at me.

The quiet one got up and gave me the biggest hug I’ve gotten in a long time.

I think the quiet one would agree with me, when I loudly agree with Peter Breggin, who says “psychiatric diagnosing is a kind of spiritual profiling that can destroy lives and frequently does.

Check out his piece — it’s a wonderful read.

Yet more thoughts on TBI and mental illness

This morning (6/9/9), I took a gander at the ways people have been finding their ways to this blog since I first started it over a year ago.

  • 38 people got here by looking for info about TBI/brains and anger/rage
  • 86 got here just searching on tbi
  • 156 got here by searching for info on interviewing
  • 39 people got here by searching for brain info
  • 225 people found their ways here by searching on tbi and mental illness

Apparently, it’s something people are concerned about.

And so am I.

I’m worried. Really, really worried. Because this society seems all too eager to label people “mentally ill” when they really have logistical problems — it’s not necessarily that they aren’t thinking properly, ’cause of some inner psychological conflict going on — it’s that they can’t think properly, ’cause their brains have been rattled or somehow impacted.

And our society seems all too eager to prescribe medicines for psychological conditions — meds which may actually exacerbate the issues at hand.

For instance, as I understand it, the irritability and temper flares that come with TBI are often due to a “constant inner restlessness” that takes up residence in your head after a brain injury. That constant restlessness can be directly related to something called “tonic arousal” which (as I understand it) has to do with how awake your brain is. After TBI, certain functions slow down — processing slows down, connections that were once intact are now broken, so it takes the brain longer to sort things out. And with that slowness comes a decrease in tonic arousal… which also can lead to attention difficulties… which can feed into all sorts of problems that can make you nuts and drive you to distraction.

TBI >>> less tonic arousal >>> increased irritability >>> more meltdowns, rage, blow-ups, etc.

Now, let’s say some doctor or psychiatrist gets hold of a TBI survivor and diagnoses them with some anxiety-related condition, or some other “psychological” dysfunction. Let’s say the attending caretaker prescribes one of those “downregulators” that slows down the processes that can feed into manic/anxiety type experiences. What do you get when you downregulate someone who’s already struggling to keep up? Decreased tonic arousal. Which can mean more irritability, more temper flares, more rage, more meltdowns… possibly increased violent acting out? Maybe?

Downregulating meds >>> even less tonic arousal >>> even more increased irritability >>> more and more and more meltdowns, rage, blow-ups, etc.

I’m not a doctor, but I don’t think you need to be one, to get this connection. Maybe not being a doctor helps you see it all the clearer, without the long-term effects of that sleep-deprived-traumatized-resident fog that lots of docs get hammered by when they first start practicing.

This really worries me — had I mentioned that?

And given how many people sustain TBIs each year, not to mention how many vets are returning from Iraq and Afghanistan with TBI’s and PTSD, etc., it really opens the door to a lot of crappy medicine and pain for the families and friends of the folks who have given their very brains in service to this country.

I think the only thing we can hope to do is educate people — not so much the doctors, because how many of them are listening? It’s about educating “the people” — the patients who look high and low for help (if they ever figure out that they need — and can get) help. Making sure people have access to truthful and accurate and independent information — and giving them easy and useful ways to wield that info as they defend themselves from the quacks of the world, not to mention Big Pharma.

Ultimately, it is up to each and every one of us to fend for ourselves, but a little help would be nice, now and then…