Concussion symptoms got you down, this holiday season?

head form of metal meshYou’re not alone.

The holidays can be tough for anyone who’s got extra difficulties, due to chronic illness. And with TBI / concussion, sometimes the worst thing is being around people who don’t understand what it’s like to have your life turned upside-down by a “mild” blow to the head.

As I’ve said many times, there’s nothing “mild” about a concussion or a traumatic brain injury. That momentary alteration of consciousness means that something “in there” got injured. And no amount of positive thinking or motivation or … consequences… is going to change the functional ability, unless you have adequate time to recover and rebuild your wiring.

You have to keep the stress down, to do that effectively. It takes time and practice and sometimes a bit of luck, to rebuild what you once had. And being pushed and prodded by people who don’t understand TBI or “get” why concussion can turn your life upside-down, doesn’t help with that.

The holidays can be stressful, to begin with. Then you add all the people, the expectations, the increased pace (a lot of us are racing to finish year-end goals at work, at the same time we’re shopping and figuring out holiday party logistics), and money pressures… and it just gets worse. Cognitive reserves that were already in short supply, get even less… and meanwhile, everybody expects you to KEEP UP! KEEP UP! WHAT’S THE HOLD-UP?!

Some of my own challenges have been:

  • Remembering what I’m supposed to do at work. I’ve forgotten a bunch of stuff I was supposed to do – and I even forget to write it down.
  • Dealing with depression. It comes and goes with me. This year, it seems to be coming more than it’s going.
  • Keeping cool with my spouse, when tensions get high.
  • Staying on my exercise routine.
  • Eating sensibly, and not “stuffing my face” with all kinds of candies and cookies. I’ve done well in terms of candy, because I can’t have chocolate (sets off migraines with me), but I’ve eaten more bread and cookies than I should.
  • Getting enough rest, and keeping on my regular sleep schedule. A tired brain is an irritable brain, and boy, do I get irritable when I get tired. I’ve had a hard time keeping on my sleep schedule, these past weeks, and I really have to concentrate on getting that sorted out when I’m off work next week.
  • Not pushing myself too hard. It’s easy for me to push. I know how to do that. But while it used to work okay when I was in my 30s, now that I’m past 50, it’s just not the same. I need to remember where I am… and act accordingly.

Basically, keeping myself together during the holidays is like an extra part-time job. It helps that I haven’t spent a lot of time socializing with friends and family. That takes the pressure off. But for many, many other people, they don’t have that option. And my heart goes out to them.

Still and all, it will be over soon enough. Just a few more days till Christmas, then another week till New Years (which isn’t much of a holiday for me, anyway). Then I can get back to my regular life.

And start the year fresh.

Onward.

Connections between pain and PTSD

The past couple of weeks have been crazy for me, and it’s taken somewhat of a toll. I’ve been busy with work, busy with other activities, busy, busy, and more busy. I also did some traveling for about a week to out-of-state relatives, for a big family get-together. In and of itself, it was a great time. But the change in my schedule, the long hours of driving — over 30 hours, all told, in the car — not being able to get enough sleep, and the change in food choices (how do they eat that stuff?) all threw me off, big-time.

I managed to keep it together and not completely blow-out/melt down during the trip, or immediately afterwards, which often happens when I travel to this particular branch of the family tree. But the past few weeks have been packed full of crazy-busy-ness that I now realize has been a pretty concerted effort to dull the pain of the trip.

I’m not talking about emotional pain… though it’s never easy to spend time as an outsider, when everyone else is connecting and having a wonderful time being together — I’m the oddest bird in the family, and between my difficulties in keeping up with what’s going on around me and my narrow and intense interests that aren’t run-of-the-mill, people often don’t know what to do with me.

What I’m talking about is physical pain.

Yes, physical pain — the kind that burns, that aches, that throbs, that stings. The kind that makes my clothing hurt me, that rakes my legs when my pants rub against them… the kind that makes me jump whenever someone touches me… the kind that sends a shock wave of smacking ache to the marrow of my bones when my spouse puts their hand on my forearm… the kind that keeps me from sleeping, because I can’t stand the feel of sheets on me, but I also can’t stand the feel of air-conditioning blowing across my skin… the kind htat gets worse when I am stressed or tired or upset or all of the above… the kind that I often don’t even know is there until someone makes contact with me, and I jump, and they feel like they’ve done something to hurt me. They have. They didn’t mean to, and they would never do it on purpose. But they hurt me.

It’s not just the emotional pain of family visits that gest me. It’s the physical pain, as well.

Here’s the deal — for as long as I can remember, I have had issues with a whole slew of sensory problems, the most disruptive of which was body-wide pain. I can remember, ever since I was a little kid, feeling like I was being hit, when people would just reach out to touch me in very innocent, social, appropriate ways. I would shrink back from them, and they would often take offense or get angry with me for “rejecting” them. It sorta kinda messes with your head, when the people who love you the most cause you intense pain when they try to show their affection for you. And it tends to muck up your relationship with them, when you can’t accept their (appropriate) affection, but they don’t understand why.

To tell the truth, I didn’t even understand why. It’s hard to explain, unless you’ve been there, but the experience of painful touch is such a visceral, physical thing, it sometimes doesn’t translate into words. It’s just there. You can’t describe it, you can’t even really pinpoint it. Sometimes you have no idea it’s there, until someone makes contact with you. Then, all you know is, it hurts, and you pull away to avoid it, so you can just get on with your life.

And you do things to avoid/mitigate it. You steer clear of expressive people. You avoid demonstrative friends. You always keep more than arms’ length away from other people, just in case they reach out to you. You spend time with people who either don’t like you or couldn’t care less about you, because the chances of them touching you is small to none — and it’s easier to be around those types of people, than the friendly ones who like to make contact.

These things are done on a subconscious, instinctive level, and sometimes they don’t even register with you when you’re doing them. Like pulling away from people when they come close. Like shrinking back from a hug someone is trying to give you. Like jerking away quickly when someone touches you accidentally.

And depending on how sudden or shocking the pain is, it can trigger a whole cascade of other sensations/symptoms/reactions that look a whole lot like PTSD.

Over at Helpguide.org, I found this list of symptoms

Re-experiencing the traumatic event

  • Intrusive, upsetting memories of the event — memories of past painful contact tend to show up suddenly
  • Flashbacks (acting or feeling like the event is happening again) — yes, it does feel like it’s happening all over again
  • Nightmares (either of the event or of other frightening things) — sometimes nightmares do follow an extremely painful episode, tho’ that’s rare
  • Feelings of intense distress when reminded of the trauma — yes, it is intensely distressing to be reminded of it, it just sends me in a downward spiral
  • Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating) — my heart sometimes starts pounding, I tense up, and I feel sick to my stomach, when people touch me, sometimes

PTSD symptoms of avoidance and emotional numbing

  • Avoiding activities, places, thoughts, or feelings that remind you of the trauma — I tend to avoid physical human contact of any kind; women frighten me, because they tend to be so tactile, and it’s literally too painful at times, to interact with them
  • Inability to remember important aspects of the trauma — I tend to block out the particulars of painful experiences. All I know is, it’s hurt me before, like it’s doing now
  • Loss of interest in activities and life in general — Why should I get involved, if it’s just going to hurt like the dickens?
  • Feeling detached from others and emotionally numb — Oh, yes… ’nuff said.
  • Sense of a limited future (you don’t expect to live a normal life span, get married, have a career) — how precisely am I supposed to live fully, if the experience of basic human interactions promises me pain?

PTSD symptoms of increased arousal

  • Difficulty falling or staying asleep — could have something to do with my insomnia?
  • Irritability or outbursts of anger — yet one more contributing factor
  • Difficulty concentrating — it’s tough to concentrate, when you’re on high alert. Especially if you’re working with tactile people.
  • Hypervigilance (on constant “red alert”) — someone might be approaching…
  • Feeling jumpy and easily startled — but of course

Other common symptoms of post-traumatic stress disorder

  • Anger and irritability — not being able to establish comfortable human contact makes me nuts and pisses me off
  • Guilt, shame, or self-blame — why can’t I just be normal like everyone else and tolerate a hand on my shoulder?
  • Substance abuse — been there. Thank heavens that’s behind me.
  • Depression and hopelessness — my occasional visitors
  • Suicidal thoughts and feelings — once upon a time, occasional visitors. Now, very rarely.
  • Feeling alienated and alone — not just feeling… BEING alienated and alone
  • Feelings of mistrust and betrayal — it’s hard to not feel that way, when everyone around you might possibly cause you pain
  • Headaches, stomach problems, chest pain — the first two, yes. The third, not so much

So there we have it — PTSD arising from chronic body-wide pain. Painful touch. There’s even a word for it — Allodynia (meaning “other pain”) — a painful response to a usually non-painful (innocuous) stimulus. I haven’t been formally diagnosed. That would require that I talk about it to my doctor. And talking about it out loud to anyone has never really been an option for me, except for with my last therapist who is long gone by now. It’s just too painful. Emotionally and physically.

I’d rather keep my own counsel and just live my life. Pain-free. Alone, but pain-free.

Being alone not only keeps me out of arms’ reach (literally) from people who may hurt me, but it also keeps emotional upheaval at a minimum. It’s hard to get worked into a state, when you don’t have much contact with people who affect you emotionally. I can block out all the politics and social drama pretty well. But the emotional connections I have with people… well, they’re trickier. So, I steer clear of them, by and large. And I steer clear of emotionally charged subjects with people — like avoiding talking about my chronic pain issues with my doctor.

It’s wild, how emotional distress can heighten physical pain. Emotional pain sets off an alarm state with me, and that alarm state unleases a whole avalanche of stress hormones and hypersensitive biochemical agents into my system. And the buildup of all the stuff that gets “stuck” in my system does not help me. Not one bit.

Over at Healthjourneys.com, Belleruth Naparstek quotes from her book Invisible Heroes and describes it well:

Chronic Pain Conditions
This constant activation of the alarm state leads to an accumulation of metabolic waste products in the muscle fibers, and the release of kinins and other chemical pain generators in the tissue, resulting in myofascial pain and the appearance of those seemingly intractable chronic conditions such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic headache, TMJ and more.

And because these conditions are generated in the brain stem and the motor reflex centers in the spinal column, and routed through a perturbed, automatic, arousal circuitry, peripheral forms of treatment provide only temporary relief.  Constantly activated by everyday sensory cues, normal muscle movement and spontaneous memories, symptoms grow and become more and more entrenched over time.  In other words, this is one nasty gift from the kindled feedback loop that, if not interrupted, will just keep on giving.

Our epidemiology research has already shown us an astounding percentage of people with baffling chronic pain conditions and “functional” diseases that have no obvious causes, who have been found to have prior histories of severe trauma.  Probably if we could tease out the subset of traumatized people who experienced substantial dissociation during their trauma, and a truncated freeze response in the midst of it, we might find closer to one hundred percent suffering from posttraumatic stress.  Unfortunately for them, they are often assumed to be malingering or engaged in attention-seeking behavior for neurotic reasons, instead of suffering from a very serious, self perpetuating condition with a potentially worsening trajectory.

Included in this group of maligned and misunderstood patients would be scores of people suffering from pelvic and low back pain, orofacial and myofascial pain, genito-urinary and abdominal pain; interstitial cystitis; and the previously mentioned headache, fibromyalgia (FM), chronic fatigue syndrome (CFS), and reflex sympathetic dystrophy (RSD); irritable bowel syndrome (IBS), inflammatory bowel disorder (IBD), multiple chemical sensitivity (MCS) and migraine.

And there it is — in part, anyway. The post over at Belleruth Naparstek’s blog asks Is There a Connection Between Fibromyalgia and Traumatic Stress? but it’s not just about Fibro, to me. It’s about the “and more” she mentions. It’s about the “whole lot more”.

So, what the hell can I do about this? I’m of the mind that the best reason to talk about anything difficult, is to figure out what to do about it to make it better. To reduce the quotient of human suffering in the world. That includes my suffering (I’m in the world, after all). What can I do about this pain business?

Well, first, I need to get back on my schedule. I need to get back to my sleeping routine, which I’ve been doing pretty well with. I need to get back to eating the right kinds of foods at the right times of day — and I’ve been doing that pretty well, too. I also need to exercise and do other things that will enable me to discharge some of the built-up stress from the trip. I tried explaining to my new therapist how disruptive that sort of travel is to me, but they didn’t seem to “get” the intensity of it, so I’m not getting much support there. Screw it. I’ll support myself. I’ve been having a lot of good long cries, in the privacy of my own company, over the past few days, and that seems to be helping me. I also need to get back to my regular work schedule and just get some stuff done. Being productive has a way of chilling me out nicely, so I’ll do that.

And drink plenty of water. Take some Advil before I go to sleep. Listen to the Healing Trauma CD from Belleruth Naparstek to deal with the PTSD. Have a good cry. And another. And another. And make sure I let loose in my own company, away from others who neither understand nor want to understand just how hard things are for me… and end up minimizing and negating and invalidating my feelings about what I really go through, and tell me I’m fine and I don’t have a problem and I shouldn’t worry about this stuff,  just because they either don’t have the emotional resources to hang with me, or they’d be too traumatized, themselves, if they knew what it’s really like to live in this body.

Most of all, I need to keep it simple. Count my blessings. Remember just much good there is, along with the bad. And remember, tomorrow is another day, and all things considered, I’m pretty lucky to be alive.

The perils of pseudo-psychological problems

Something has occurred to me repeatedly, over the past month, as my sleeping habits have improved. Namely, that many of the “mental health” issues I’ve been experiencing over the past several years, have had a distinctly physiological component to them. In fact, at the risk of sounding radical, presumptuous, and heretical – though I’m seldom reluctant to be just that 😉 – I suspect that a ton of my “psychological” issues have actually been physical ones.

I’m sure I’m going to really piss off some of the psychotherapists in the room by saying this, but I have to say that catching up on my sleep and figuring out how to get a full night’s sleep more than one night in a row, has done more for my mental health than two years of therapy.

And no, I did not have a bad therapist. They were great – awesome – and they really helped me a great deal, if only by sitting there and not making fun of me when I talked about this and that.

But let me tell you – as a TBI survivor who had/has a whole raft of physical ailments (chronic pain, insomnia, sensory hypersensitivities, weight fluctuations, heart palpitations, vertigo, tinnitus, and more…), just living with all those issues can really mess with your head. And as long as only the symptoms of my physical distress were being addressed, not much moved.

I did get in touch with my feelings. That’s for sure. I figured out that I actually mattered, and that it was important for me to take care of my own health and well-being, not constantly do the martyr-hero thing and sacrifice my own safety for the sake of others. I had space to learn to look at myself and my life through a less negatively critical eye and consider that maybe, just maybe, I had a right to do more that survive in life. I had/have a right to thrive.

But one of the things I really got in touch with was the fact that my physical well-being is a huge contributor to (and predictor of) how well my mental well-being holds up. When I’m tired and in pain and weak, my ears are ringing like the dickens, and my head spins wildly and I feel like I’m going to fall over every time I move, it’s pretty damned difficult to maintain a positive mental outlook and count my blessings. When I’m not feeling well physically, the chances of me feeling well mentally and emotionally decrease exponentially.

There are some people who manage to keep a cheery, chipper outlook, despite significant physical issues. I’m usually one of those  people, and I usually manage to not let my physical problems bother me. But when I haven’t had enough sleep for weeks and months on end, chances are pretty good that I’m going to feel depressed, anxious, irritable, low — and show other signs of clinical depression.

Okay, so here’s the thing — when I was in therapy with my prior therapist, they repeatedly came back to the suspicion that I was depressed. They asked me a number of times if I thought I was depressed, and if I’d said “Yes,” I’m sure they would have followed up on that, however a therapist does that. And they probably would have plumbed the depths, looking for what it was that made me depressed — some repressed past trauma, some childhood violation, some incident that I’d blocked out to keep from being unhappy.

And lots of talk would probably have ensued. Talk, talk, and more talk.

Now, talking is all very well and good, but as Belleruth Naparstek said at a conference I once attended (and I believe she’s said in her book “Invisible Heroes”), sometimes talking does more harm than good, by dredging up old traumas and forcing you to relive them. That can be very unpleasant, as I’m sure everyone is aware. And for me it’s really problematic, because I prefer to dwell on problems with a solution in mind, and if I’m dwelling on a past incident which cannot be changed (it’s already over and done), I get even more agitated and irate over it.

Some people might say that I’m just not willing to deal with the emotional fallout of misfortune, but I say I’m a solutions-oriented individual and the main reason I think about things, is so that I can change them, so why in the hell would I spend all this time thinking about stuff that cannot be changed? The therapists in the room who would say I’m emotionally “blocked” would probably try to treat me… with more talking about shit that makes no sense for me to talk about.

Make no mistake — I’m not at all reluctant to discuss misfortunes I’ve experienced in the past. But any discussion that takes place with me, has to be about devising solutions and coping mechanisms for the problems I have as a result. I’ve had some really shitty things happen to me, but you know what? It’s over, and I’ve managed to forgive just about everybody in my past for their shortcomings… even myself. The problem is not that I’m represssed. It’s that people want to process the wrong type of stuff with me — problems, problems, and more problems — and my reluctance to discuss stuff I’ve already been through a thousand times in my head is interpreted as repression or avoidance or some other psychological/emotional impairment.

What’s more, when pressed to explore the nether regions of my soul with talk therapy, I tend to get turned around. As good as I am at writing, I’m can be kind of pathetic when it comes to spoken conversation. I have an intensely visual mind, which follows conversations and spoken communication with series’ of images that are like an associational, disjointed movie in my head. I literally see pictures of what people are talking about, and when people start talking about things for which I have no picture — or I have several of them to choose from — it takes me a while to catch up and keep up. It’s not that I’m stupid. Or that I’m slow. I’m just incredibly visual in my own mind, when it comes to spoken language, and visual processing doesn’t lend itself as well to spontaneous conversation.

So, when I’m talking to someone about what’s going on with me, and they start talking about things that aren’t immediately famliar to me — or that I’m not expecting them to talk about — it’s really easy for me to get agitated and introveted. I need time to catch up. I need time to keep up. I need time to translate their words into pictures and process the information visually, so that I can make sense of what they’re saying to me. But I don’t always have that much time, and over the course of my life, I’ve gotten into the bad-but-pragmatic habit of just pretending I know what’s going on, while making mental notes in the back of my mind about what was just said, so I can go back to it later and rethink it all and hopefully make sense of things.

The problem is, in a therapeutic situation where I’m supposed to be making some sort of progress and addressing issues, this really works against me. It tends to make me look reticent and/or like I’m deliberately withholding. I’m not — I’m just trying to process the information and make sense of it. Believe me, if I could answer immediately like other people, I would. But my brain just doesn’t work that way.

I also tend to get really frustrated with myself and get agitated, which looks like I’m uncomfortable talking about certain things. It’s not that  I don’t want to let other people in. I do — more than I can say. But I get so turned around in my head, and I get so upset with myself for not being able to follow, that I start to flail and spin and then shut down. I feel like I’m getting backed into a corner, and I get revved… and by the end of the session, I look like a totally basket case who needs to spend years sitting across the room from someone, before I can get in touch with my feelings.

This sucks on so many levels, I can’t even begin to tell you. The worst thing of all is having someone who is supposedly trained and experienced in these matters misunderstanding, miscalculating, misdiagnosing, and mis-treating conditions which don’t even exist the way they think they do. On the surface, you’re exhibiting classic signs of clinical depression and post-traumatic stress disorder, but underneath it all you’re struggling for words that will explain exactly what is going on with you, and why you’re acting the way you do. And the bitch of it is, because you’re the (sick) client and they are the (trained, experienced, licensed) therapist, you’re not in a position to be taken totally seriously when you do manage to tell them a little bit about what’s up with you. ‘Cause they think you’re seriously mentally ill and you can’t possibly know what your real problems are.

After all, you probably have no recollection of what that nasty-ass uncle did to you as a toddler when your mother’s back was turned.

It’s a problem. I hear plenty of stories about therapists who don’t know  what they’re doing… as well as those who know very well what they’re up to but have no scruples or morals. I hear plenty of tales about over-prescription of medications, as well as  misdiagnosis of mental health issues that have more to do with fundamental differences of information processing, than pathology. The mental health profession has been pathologizing the diversity of human experience for as long as it’s been around — perhaps that’s a hallmark of any helping/caring profession that’s trying to get on its feet. Applying labels like “hysterical” or “deviant” or “sick” to people who are just different from the norm is a time-honored tradition in the mental health field, so there are no surprises there. But it’s a problem that’s been shifting and changing over the past 30 years, and that’s a good thing.

Now, if I can figure out a way to explain to my new therapist the nature and degree of my physical issues, so they can see my issues in light of my insomnia, pain, and physical sensitivities… and not spend an inordinate amount of time focusing exclusively on my past emotional trauma, that will be a good thing.

Sleep mask + earplugs = magic

I actually slept for seven hours last night.

Amazing.  I haven’t slept that long without being completely and totally exhausted/depleted/at the end of my rope in quite some time.

I’ve been sleeping in the guest bedroom for the past few nights, so I can sleep through the night without being woken by my partner sitting up late reading, snoring, coughing, or otherwise being human. The only problem is, the guest bedroom has a great view of the back yard, and the back yard is surrounded by trees, and those trees are filled with lively birds that love to awake and sing-sing-sing at 4 a.m. I typically wake up around 4:30, when I sleep back there. I may be able to sleep uninterrupted all night, but the morning is a problem.

So, sleeping in the guest room isn’t necessarily the most sleep-conducive thing to do, unless I go to bed at 8 the night before, which is out of the question. My body just won’t do it. Nor will my mind.

But last night, I had to do something to take the edge off my exhaustion. I haven’t been sleeping very well at all for weeks, now. I have been getting 5-6 hours a night, which is just murder on me, because it coincides with some intense deadlines at work. Not only does the exhaustion take a toll on my cognitive functioning, but it also erodes my mood. Whereas I’m usually pretty “up” and can-do, and my outlook on life is quite open and ready for just about anything (within reason), when I’m over-tired, my mood just spirals down, and I end up in very, very bad places, where no amount of reason or motivation will drag me out.

I noticed it especially last night

I was really feeling good all day, until late in the evening, when I was going to bed. All of a sudden, I was melancholy and blue, feeling sorry for myself and feeling lonely and afraid and overwhelmed. I just couldn’t handle much of anything, and I started to get mired in that sad-sack poor-me swamp from which no good things come. I was starting to get intensely depressed and feel like there was no hope for me at all.

I started to think about my family and how we just don’t connect. I started to think about my new therapist and get down about how the relationship I have with them is an artificial one and no matter how I may feel we’re connecting, they are essentially a professional consultant, and — for my own sake — I need to keep the relationship somewhat arms-length. I started to think about my old therapist, and wonder how they’re doing.

I was spiraling down into that place I’ve often “gone” in therapy… that place where my old therapist loved to “camp out” and plumb the depths of my past, to see what terrible hurt had been done to me. And just as it used to make me really uncomfortable to delve into all that — not because I’m afraid to explore the places where I’ve been hurt (I’m only too happy to do that at times), but because they were making flawed assumptions and reaching inaccurate conclusions about what caused that depression, what was pulling me down, what I needed to deal with.

I can think of many, many instances where I spent a whole hour hashing and rehashing crap that was dragging me down, only to get all turned around and more frustrated… then I had a good night’s sleep, and everything was miraculously all better.

Seriously. I’m not just making this up to make the psychotherapists of  the world feel inadequate. The main problem wasn’t that someone was mean to me when I was ten. It was that I hadn’t been sleeping.

Fortunately, I recognized that I was going there, last night, as all the thoughts and fears and regrets tumbled around in my head like puppies in a basket.

Thankfully I had the presence of mind to notice it AND do something about it

“This is ridiculous,” I said to myself, as I sat in the bed with my journal, ready to write some maudlin entry about the day. I had had such a great day — clipping along, getting things done, making good progress… only to crash at the end. I could tell very clearly that I needed to sleep, and I knew that I needed to do something about being woken at 4 a.m. by exuberant birds.

So, I pulled out a sleep mask and earplugs I picked up a couple of months ago. I had tried to use the earplugs before, but they felt strange in my ears, and I hadn’t tried again. Last night, I was beyond caring how they felt in my ears, and I fit them in as far as they could go. I also found an extra fan and turned it on low — to circulate the air in the room and to drown out background noise. Then I pulled on the sleep mask, laid back, and counted my breaths that were echoing loud in my ears.

One of the problems with wearing earplugs with me, is that it makes the tinnitus louder. I have constant ringing in my ears, which gets almost deafening when I stop up my ears. It’s the craziest thing, and it drives me nuts. But last night, I was in no mood to care. I just laid back, focused on my breath, and dropped off to sleep.

And wonder of wonders, I actually slept till nearly 6 a.m. A record for me lately.

And I’m feeling great. Really ready to take on the tasks ahead of me today and make some good progress. That’s a good thing. Because today is D-Day for this project. Deadline Day. And I have to be sharp. Dullness is not an option.

Tomorrow I’m going to try the sleep mask and earplugs again. Little by little, I’ll work my way back to being able to sleep. And take care of all these little niggling sleep-related problems as I go. It just amazes me, how much a good night’s sleep does for my mental health and overall performance. It’s like night and day.

Sleep matters

When I’m overtired, I become moody, can’t focus, have problems with thinking tasks, become over-reactive, and I have a tendency to melt down. It gets ugly pretty quickly, and then I have to work double-time to make up for what I’ve said and done and try to repair the havoc I’ve created around me.

But when I’m rested, I’m happy, hearty and whole, and no matter what life throws at me, I can handle it. I’m a productive, positive partner and team member, and people love to be around me. No obstacle is too much for me, when I’m rested. And no event I’ve experienced is too big to overcome.

Which makes me wonder how much unwarranted exploration I’ve indulged in, during past therapy sessions, when I was trying like crazy to understand why I was so depressed and down… why I was struggling so. I overturned all kinds of rocks and plumbed the depths of my aching soul… and was unable to come to terms with just about anything I found there.

But magically, when I slept and had enough rest, suddenly it all became clear. And I could not only deal with what I found, I was also able to use it and change it and shift it and have it be an asset, not a liability in my life.

And I wonder how many other folks have similar issues to mine — psychotherapy clients struggling with lots of stuff not just because of the nature of the events, but because they haven’t slept well in weeks, if not months and years… and psychotherapists themselves being thwarted in their work because the person across from them is physically incapable of a positive, healthy outlook on life.

If I were a psychotherapist…

One of the first things I’d do in dealing with my clients, is find out how they’re doing physically. I’d find out of they’ve been sleeping, how they’ve been eating, if they’ve had much exercise. I’d find out what their physical health is like, find out when they’re at their best and when they’re at their worst, and try to schedule time with them when they were at (or near) their cognitive peak — or at the very least, avoid seeing them when they were at a low point.

I wouldn’t waste anyone’s precious time, processing their “stuff” when they were over-tired or hadn’t been eating or exercising regularly. And I wouldn’t agree to see someone who wasn’t taking care of themself. I suppose I would start out with a new client who wasn’t in the best of condition, but if they persisted in neglecting their bodies and not getting enough sleep, I would drop them like a hot potato. Sure, they would be a natural source of unending revenue, but if I only took clients who were likely to need my help till the end of their born days, I’d be a pretty crappy therapist.

Most of all, I’d focus on the sleep thing. Especially if someone had sustained a TBI. Sleep deprivation makes you crazy, overly suggestible, unpredictable, and easily manipulated. Spy/intelligence agencies have known that for years, and they’ve used it to their advantage. But getting enough rest each night is one of the primarly building blocks of good health. If you don’t care about your health — mental or physical — then how much you sleep shouldn’t matter. But for me, it matters a whole lot.

And I look forward to getting more of it.

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…

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to http://www.givebackorlando.com/, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

  • they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
  • they attracted attention from people who didn’t like what they had to say, who made them take it all down
  • they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
  • they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
  • the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
  • they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
  • some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.

Back to tracking my TBI recovery

Okay, so now I’ve take care of these “housekeeping” items:

  • I’ve squared away my job situation — I’ve gracefully exited my last position and am ramping up for my new one
  • I’ve gotten clear on my future path — keep my skills up and learn-learn-learn
  • I figured out my transportation into work each day
  • I’m sorting out my weekly therapy/appointment schedule
  • I’m in the habit of getting regular naps
  • I’m paying closer attention to my eating habits
  • I’m exercising a little bit each day, including stretching which is so important

And I’m ready to get back to the nitty-gritty of tracking my daily progress with all my TBI symptoms.

I have made some changes to my self-assessment grid, and I’m printing out copies of it to track my daily situation.

I also wanted to share with you a self-assessment ‘questionnaire’  to track how I’m doing from day to day. I pulled together as many symptoms of TBI as I could find from different websites, and I put them into a format that is helpful for me, and I’ve been using my self-assessment form, on and off, over the past year or so . I have found that when I am actively tracking my immediate situation, I’m better able to monitor and manage my situation. I track whether or not things are “up” with me, what they’re like, the level and impact to my daily functioning, what I do about it, and whether it works or not. Then I have the information on-hand to refer to later, when I run into trouble.

Interestingly, I have found that phrasing the criteria a specific way makes it easier for me to self-assess. A lot of these issues have been persistent and intrusive with me for as long as I can remember, but I couldn’t see they were there, because I wasn’t looking for them specifically. But I found that actually identifying them specifically and asking myself directly if they applied to me at that time made it much easier for me to identify them. Saying “I’m angry!!!” versus just checking off the “Anger” box, which I’ve seen on some websites, makes it more immediate, and I get an instant Yes or No response to it. It also keeps me honest.

When I first started self-assessing some time back, I had a lot of varied and detailed information to fill in, but over time I’ve become better at sorting through things. I think that’s perhaps one of the reasons I’ve been doing better over time. I’ve been actively practicing looking at my situation and organizing what I find.

Now, I find my issues are less “colorful”, but they are still persistent. Unfortunately, I have not been doing as much self-assessment as I should in the past months, and I can tell a difference in my self-confidence and my anxiety levels. But that is changing. Now I have my daily schedule almost in place, and I can block off time to do this self-assessment work at lunch in a quiet location near my office (but not in it). So that’s good.

I just need to make the effort. And so I shall.

I guess one of the reasons I had left off tracking my progress, is that I got so upset and bothered about things never getting completely better. I’ve been doing better about my agitation and my temper issues, as well as my interpersonal relations, but the problems never disappear 100%. They are always there in the background, and their constant presence depresses the heck out of me.

It’s just really tough, sometimes. I don’t want to be unwell. I don’t want to be so volatile. I don’t want to have so many issues. I want this all to get better and go away. But it’s not. Still, if I can’t keep track of myself and work on all this, it really gets hold of me and derails me, which is so not-good, I can’t even begin to say. I’m in a new job, and I can tell my issues are rearing their ugly heads again. I have to do something. So I’m going to start self-assessing regularly. And avail myself of my neuropsych therapist who knows about this stuff and may be able to help me sort through it all.

So, I’m going to just bite the bullet and start tracking myself. I can take time out during the day — over lunch and/or over morning and afternoon breaks. I also have time on the train to self-assess, so that’s good. I just really need to do it, because my problems with not being able to initiate/get started on important things, my tendency to just sit and not want to move, my bad habit of isolating and withdrawing, and my disorganization are all starting to take a toll on me. And I’m only two weeks into the job.

I need to get a grip on this. Do the work-work, yes, and do the self-work, too. I cannot and will not be sidelined by this TBI stuff. I still have a lot to offer and accomplish, and I have tools to help me do it.

Self-assessment is one of the most powerful (and freely accessible) tools I have.

So, I must use it.

So, what have we been treating, all these years?

I’ve been reading an interesting book, lately – Healing the Soul in the Age of the Brain – Becoming Conscious in an Unconscious World, by Elio Frattaroli, M.D. It’s an interesting discussion of the place that the soul has in today’s world, and in the first 18 pages (which as far as I’ve gotten in about a week), the author makes pretty clear that he’s none to keen on the importance that modern science is placing on neurology as an explanation for why people are they way they are and why they do what they do.

Dr. Frattaroli is none too keen on the purely scientific explanations for psychological difficulties, and I can see his point. But from my own point of view and my own life experience, I have to say that neurology and biochemical explanations and scientific inquiries into the inner workings of my brain have helped me more than any amount of psychospiritual investigation. And I also have to say that understanding my brain as a physical entity which cannot help but physically affect the rest of my body in so many, many ways, has eased a great deal of discomfort in my life.

For hundreds, even thousands, of years, the Western world has very diligently separated the body from the spirit. Flesh versus soul. Earth versus eternity. And the highest form of activity seems to be the ability to transcend the limits of the physical, the manifest, the earthly, the mundane. It seems to me that this cultural interest in explaining psychological phenomena as physical conditions is a sort of redemption of the body. A grudging but almost inevitable admission that the body has much more to do with the psyche than we have heretofore been willing to admit.

I’m not sure if I’m going to finish Healing the Soul. I do respect the author for his contributions and his work, but A) the book is really long, B) the author’s tone is a bit pompous for my tastes, and C) the author worked with Bruno Bettelheim and  still apparently idolizes him  (Bettelheim was the psychiatrist who blamed autism on “refrigerator mothers,” thus sending countless mothers of autistic children into downward spirals of unwarranted guilt and shame, not to mention fabricating a past and credentials that were unsubstantiated. He committed suicide in 1990 at the age of 86, not long after biographer Richard Pollak started researching him. Let the record show, I am not a fan of the late Dr. Bettelheim, and I have to wonder about people who are.)

I also really reject the underlying premise that neurology and science tell us nothing about how the psyche works. It may not tell us about the psyche, per se, but it can tell us about the physical conditions that the psyche is dealing with, and help distinguish between what issues are causes of distress, and which are effects of distress.

Certainly, psychological challenges like PTSD and depression and emotional volatility can be eased by a psychotherapeutic process. But if the underlying physical issues, like TBI or extreme fatigue or sensory issues, go unrecognized, then what chance is there of us every actually doing anything about them? It’s all very well and good to explore the nether regions of the soul, to grasp the deeper meaning about life. But sometimes you just need ways to get through the day, whether or not you grasp the deeper meaning.

Plus, TBI and all its after-effects can really make you crazy with the intensity and unpredictability. It can turn you around and make you doubt your own sanity. It can trash your sense of who you are and where you fit in the world. It can strip you of your identity in subtle, subtle ways.

And addressing those issues from an exclusively psychotherapeutic point of view is worse than ineffective — it can actually make things worse. Because here you sit, week after week, trying to figure out the inner reasons why you’re so prone to losing your temper, trying to dredge up what terrible things you went through as a child that would cause you to be so volatile… here you sit, week after week, trying to figure out why you just can’t get started with things and why you have trouble finishing them, trying to get motivated and inspired and failing miserably at it… here you sit, week after week, trying to understand why you’re always so on-edge, making one attempt at another at some “breakthrough” introspection that’s going to reveal the secrets of your distress… And all the while, your brain is not cooperating.

When your brain has been rewired by injury to not take the same “cognitive routes” it did before, and it’s producing various biochemicals and hormones and responses very differently than before, I personally don’t believe that traditional psychotherapy is as effective as it is with the neurologically intact population (if there is such a thing). If the physical factors of the brain aren’t taken into consideration when looking at the spirit/soul/psyche, an important piece of the puzzle is lost… and you can’t be expected to really break through.

Missing the pieces of the TBI puzzle is like sitting at a table with a huge jigsaw puzzle in front of you, but all the pieces are exactly the same size and shape AND there are a percentage of them missing. How do you even begin to complete the picture? The edges don’t nest neatly, you can’t tell which ones go where, based on their shapes and sizes, and you’re not sure which ones are even missing.

Maddening.

The way I see it, it’s all connected – body and brain and mind and psyche. And just as I think purely neurological explanations can’t unlock the mysteries of mental health, I also think purely psychological explanations fall short. Physical problems, like brain injury, can create conditions that need to be dealt with. The consequences of those conditions can cause mental distress. Mental distress can be eased with psychotherapy, but as long as the underlying, precipitating conditions remain in place, the mental distress will continue to cause problems, all across the board.

Addressing issues only psychologically with someone who’s been brain injured is like building a beach house in a hurricane-prone area. You can do all you like to shore it up and design it well, but the right hurricane conditions can turn your lovely abode into a pile of kindling. It’s a physical fact you have to live with. And as familiar as you may be with seasonal weather patterns, it can hard to tell just when those conditions are going to arise.

That’s one of the reasons I sought out my new therapist. They’re a neuropsychologist by training, and they understand the back-and-forth interplay of brain and mind and body and soul. I can really tell a difference between this therapist, and my last one (whom I’m winding down with, over the next weeks). There’s less asking me subjective questions — how do I feel, how am I experiencing things — and there’s more objectivity — given my past, what makes me think that taking such-and-such an action will have different results than before? My new therapist is also a lot less reluctant to offer advice and ‘talk me back from the edge’ of bad or ill-conceived decisions. They also know how to snap me out of a downward spiral of frantic knee-jerk reaction. That’s good.

My new “psychotherapeutic process” is much less about exploring my feelings; it focuses more on results — looking at my actions and changing my decision-making/coping process, and looking at how that lets me live my life better — or worse. It’s a relief, too, because my emotional state is directly related to logistical problems I have, so it really varies, depending on how things are going for me, in everyday life. When I’m tired, no amount of therapy is going to help me overcome feeling down. When I’m all frazzled from a day that was totally screwed up by my cognitive impairments, 50 minutes of talking isn’t going to make all right with my world. It’s not even going to make a dent, if my brain is tired and overtaxed.  And even with all the psychotherapeutic skill and experience in the world, a process that revolves around a broken brain is NOT going to be the same as with someone whose brain has never been bruised, their axons sheared, or their basal ganglia torqued past what’s safe.

One of my big issues with therapy has been this unspoken assumption that if I’m such a mess, certainly something awful must have happened to me as a child. Someone must have done something terrible and awful that I’m just afraid to approach. In the eyes of some trained professionals, my emotional lability and intensity and apparent depression are signs of psychological problems that stem from the Bad Things that were done to me. And if I can just get to the root of those things, I can resolve them and get on with my life.

Respectfully, I have to disagree. Brain injury has not been factored in nearly as well as it needed to be, in my prior therapeutic relationship. I do have an emotional subtext going on with me, but it is NOT based solely on things that were done to me. (It’s very frustrating for me to feel like I’m not entitled to make this assertion, as a client of a licensed psychotherapist, but I’m making it anyway.) There’s an emotional flavor to my life that’s directly related to things that have happened to me because of my mild traumatic brain injuries and the way my mind works as a result of them.

Again, my emotional well-being is not always the best, and it interferes with my ability to live my life, at times.

But my emotional well-being is often directly related to logistical problems I have with my brain… and my decreased ability to live my life follows on that.

My emotional state is not just a cause of problems. And it’s not purely psychological in origin. It is an effect of physical trauma I’ve experienced, and my psychological issues arise to some extent from problems with how my brain works.

It’s an important distinction. In this case, unlike chicken-or-the-egg, in my case there is quite often a clear, logistical, objective foundation for the messed-up situations that make me nuts. My brain is not working properly. It’s not cooperating. It’s giving me bad information about what’s going on around me, and how I should react to it. My brain — not only my soul — is having trouble.

And sitting in a room with someone who isn’t fully cognizant of that has been, at times, utterly maddening. And now and then it’s made me feel even worse, after sessions than I did going in. When I think about it, there have been a lot of times when I’ve felt a certain almost imperceptible pressure to chalk my mental health issues up to some form of victimization in my past. What my parents did. What my caregivers did. What my peers did. What someone, somewhere, in my foggy past perpetrated upon me.

But that didn’t sit right with me. Certainly, some would say I’m still in terrible denial about some Awfulness that I’ve blocked out, but logically and rationally and objectively, I can identify specific instances where my reactions and actions and choices just smacked of TBI — temper flares after long and tiring days… increasing anxiety and agitation following on sensory overload… difficulty getting started on things and finishing them during times of intense fatigue… and trouble paying attention in the midst of total, utter chaos. Those may be related to psychological disturbances for some, but they map pretty well to TBI in my case.

That all being said, I have to wonder what therapists have been treating, all these years. The psychotherapeutic/psychiatric profession is a relatively new one, compared to bricklaying and weaving, but they have really cornered the market on Fixing What’s Wrong. I do have a number of friends who are psychotherapists, and they’ve done a lot of great work. But a lot of them also don’t know shit about TBI, and I have to wonder how many of their long-time clients might have some physiological cognitive impairments. One of my friends, I know, has been seeing someone who was hit on the head with a baseball bat as a kid, and has been having light sensitivity issues their entire life. They’re also agoraphobic and claustrophobic. They also just put two and two together about their TBI, recently. Now, this person has been seeing my therapist friend for years, and I have to wonder if the length of their relationship isn’t directly related to the fact that nobody in the room knew a TBI had occurred. Maybe all this time, they were trying to get to a psychological cure for a physiologically based dis–ease. Maybe the TBI survivor went away from many sessions feeling like they were a lot crazier than they let on (as I have felt, myself, at times). Maybe the therapist tore their hair out, trying to get to the bottom of the psychological ill, when one of the biggest factors was cleverly hidden inside a skull.

For the record, I do believe that psychotherapy can be very helpful for TBI survivors. But it’s helpful in different ways, than with neurologically intact people. It can help us deal with the after-effects of our injuries. But it cannot truly heal the source. People need to face up to the fact that TBI alters the brain in ways that make it less likely to cooperate… and from what I can tell, the psychotherapeutic process has not evolved over time with TBI specifically in mind. It’s been nowhere on the map, from what I can tell. And all the Freudians and Jungians in the world with their explanations and their attributions can’t come up with an easy way to address the underlying issues of a brain-injured client.

So, maybe something awful did happen to me as a kid, and I’ve blocked it all out. Or maybe my brain was altered by injuries to make it less likely to retain certain memories. Maybe my MTBIs got my amygdala so worked up so often, from both inner re-wiring and general confusion about WTF was going on around me, that the cascade of stress response biochemicals fried my memory and ability to retain experience. Maybe I was plunged into social situations that would have been highly challenging for any normal kid, let alone a brain-injured one, so my system got even more fried than it already was.

Bottom line is, there is more to the psyche than the psyche. It interacts with our physical experience and it is shaped by our physical capabilities. People who “heal the soul” may complain that biochemicals and neurology fall short of the mark in understanding human nature and redeeming the human experience. But so long as they ignore the physicality of experience — especially with regard to the brain, injured or not — the chances of them truly healing a hurting soul are not nearly as good as they think.

“So, have they tried to label you bipolar?”

Thus asked my neuropsychologist, the other day.

I was telling them about my psychotherapist friends who are well-meaning, but ascribe all kinds of cognitive and behavior issues to psychological ones.

I’ve been labelled all sorts of things by psychologist types — obsessive-compulsive, depressed, manic, repressed childhood sexual abuse survivor (which to my knowledge, information and belief is not the case), etc. — and I told my neuropsych as much.

“Or, maybe you just got hit on the head a lot,” they said, shaking their head in frustration. And disbelief.

They also told me, that visit, about another patient of theirs who had been diagnosed with “rapid cycling bipolar disorder” because they were slow and sluggish getting up in the morning, their mood picked up in mid-day, and then they wound down at night.

Turns out, they just had a wicked case of ADD and their brain worked more slowly at the beginning and end of the day. But they had to get saddled with an “extremely rare version of bipolar disorder” diagnosis… and perhaps have to take god-knows-only-what-kind of meds, on top of it.

Sometimes the mental health profession just makes me crazy nuts. Do they do it for job security? I have to wonder… 😉

The gateway of despair

I’ve been in a really up-and-down place, lately. I’m dealing with the residue of various traumas, I’m dealing with the day-to-day crap from various head injuries, and I’m winding down one job to move on to another. In the midst of my cognitive and emotional floundering, I’m hanging in there and falling back on my old coping mechanisms of smiling stoicism and shutting down those parts of me that are prone to freak out over every little thing.

I would rather not use repression as a coping mechanism, but I really need to make this job transition, so I’m just clamping down on the heartache and emotional upheaval… until I’m settled into my new job.

It’s a bit of a gamble, really. I have to remind myself that in another few weeks, I’m going to need to decompress and do some serious “autotherapy” — using guided imagery, time alone to break down, and lots of long walks down country roads… and city streets as well.

I wish I were less nervous about this, but my pattern in the past, when I was moving on from one situation to another, has been to burn bridges behind me, so I had to move forward. Poor person’s motivation. As a result, I have a lot of bad blood in my past that I’m not proud of. I just don’t want to go there, this time. I don’t want to alienate the people I’m leaving behind, so I don’t feel so badly about leaving them.

Fact of the matter is, I do feel badly about it. I have to leave to take this new job. But I don’t want to leave the old one. It’s a wonderful problem to have, in this economy, but I’m still struggling with it on some level.

One of the things that’s helped me a great deal, over the past week has been reading about “Positive Disintegration” — or positive mal-adjustment and separation from “norms” that no longer work for you. The concept was developed by Polish psychiatrist Kazimierz Dabrowski, who (as I understand it) rejected the widespread practice of labelling “maladjustments” as forms of mental illness. His premise, as I understand it, is that as people develop and mature, they inevitably encounter things about the world that don’t sit right with them and that cause them considerable distress.

In fact, the more capable of maturing you are, the more distress you’re going to be in, because no culture is perfect, and there are a lot of things that could — and should — be done differently. When you positively dis-integrate (that is, you un-integrate from the norms of society based on your own evolving and advancing understanding of your own values and concept of right and wrong), you basically differentiate yourself from the status quo and break out to form your own identiy, with your own moral compass.

Unfortunately, standard-issue cultural norms can consider such separation and differentiation as a form of mental illness or psychosis, and plenty of psychology and counseling is geared towards “helping” people adjust to life and be “well-adjusted”. But that’s not always good. Because (for the sake of “peace of mind”) you could become well-adjusted to widespread cultural acceptance of genocidal atrocities… domestic violence…  the gutting of the Constitution… accepting (and promoting) inaccurate military intelligence that warns of WMD… and buying more house than you can afford.

All cultures are a work in progress, and according to Dabrowski (who passed away in 1980 and whose name is — I think — pronounced da-BROV-ski), it’s the mal-adjusted, individually guided, conscience-driven individuals who move the culture forward to a more advanced state.

He treated “dis-ease” and “disorders” as potentials for growth and change, encouraging his patients (and others) to examine their difficulties to see what potential for growth they revealed. If you think about it, this is a pretty revolutionary approach to mental health. And it’s inclusive in ways that excite and intrigue me… and which I’ve long agreed with, though I could never articulate it as well as he does/did.

Where I am now is really in a state of positive dis-integration. I’m un-integrating from the workplace I’ve been in, for nearly a year… de-coupling from people I’ve learned to really like and work with (tho’ with varying degrees of success)… dis-connecting from the “security” of  a permanent job offer that wouldn’t pay me enough to actually live on or give me the skills that will keep me fully employable over the coming years, in exchange for a really great-paying gig that’s a contract with no guarantees but will make me more employable than ever in my chosen field.

I’m dis-integrating in favor of something better, something bigger, something with great potential. And while it’s very exciting on some levels, it’s also terrifying on others. I’m fearful that my brain will fail me, that I’ll become over-tired, that I’ll lose my ability to cope, that I’ll end up where I was way back when, when I was in high-pressure situations and melted down. I’m very concerned about my resilience, if I’ll bring too much stress home from work, if I’ll be able to maintain my effectiveness and productivity. And in moments when I’m especially tired and lonely and afraid, I despair.

That despair, however, can be a good thing. Fortunately, I know myself well enough to realize that in the morning things will quite literally be better. After I get a full night’s sleep, I write a little bit, I read a little bit, and I get on with my life, I’ll not feel so desperate, so alone and afraid. I know myself well enough to realize that the despair is there because something is missing… and once I figure out what that something is, and take steps to address it,  I’ll be able to get on with my life.

Despair is also a good reminder to me that I’m not perfect — and I know it. Someone who had no clue about their impairments and had no clue about how much better off they could be, wouldn’t bother being this down. But I know about my deficits, and I have a very keen hunger for the ideal. So, of course I’m going to feel this way, now and then.

For me, the degree of my despair is the measure of distance between my perceived real and my imagined ideal. It tells me where I’m at and it reminds me that I can’t afford to get cocky. Fortunately, my personality is sufficiently fickle — and bores easily — so I don’t stay stuck for long in that desperate state. But when I’m there, as frightening as it can be, as dark as it can be, as agonizing as it can be, there are lessons to learn. And my life would be far less bright and light-filled, if I paid no attention to them.

When it comes to head injury, chronic illness, PTSD, or any other intractable physical or mental condition that won’t respond immediately to therapy, but takes seemingly forever to get better — if it does at all — despair can be a recurring theme. I can’t speak for anyone else, and not being a trained psychotherapist, I certainly shouldn’t dispense mental health advice (if you feel you’re in mortal danger, please seek qualified psychological help!). But in my case, when despair comes to visit — as it so often does — I find I can use it as a classroom of sorts. It has plenty of things to teach me, in the moments or hours or even days it spends with me. And I ignore/suppress it at my own peril.

Despair doesn’t have to be a bad thing — unless it’s a permanent state that requires medication or other intervention to avoid suicide. It can actually be a valuable part of maturation and personal growth.

After all, it’s easier to find a little glimmer of light, when you’re in a pitch-black room.