Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
fireball explosion
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
galloping horse
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

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The MTBI Downward Spiral

I’ve written before about how ignorance and narrow-mindedness produce greater disability than injuries alone.

TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.

Here’s how you can get into trouble, thanks to a TBI:

  • TBIs have a nasty way of slowing down your thought processing speed.
  • Sleep disruptions have a nasty way of resulting in increased agitation and distractabilty.
  • Increased distractability can lead to “careless mistakes”.
  • These can lead to arguments with others.
  • Arguments can escalate if your flashpoint threshold is low.
  • A low anger flashpoint threshold can become even more explosive if you’re tired and not thinking well.

For example — say a guy with a wife and two kids and a good job is in a car accident and smacks his head against the car window. I’ll call him (Car Accident Guy.) He’s knocked out for a few minutes, and when he comes to, the EMTs take him to hospital, check him out, determine there’s no serious damage, and turn him loose. He goes  home and lies down for a while, then the next day he’s up and at ’em again, ready to get on with his life and just relieved he wasn’t hurt worse in the accident.

He seems fine to everyone at home and at work — the only problem is, all of a sudden, he can’t seem to do the simplest things — like going to the store. Or completing a job his boss assigned to him. He keeps getting distracted by the simplest things, and when his wife sends him to the store to pick up milk and bread and his prescription refill, he ends up coming home with milk and eggs and shampoo, instead. In the process, he runs out of his daily dose of blood pressure medication, and his wife is upset, impatient and pissed off at him.

His wife tries to overlook his forgetfulness at first, but after a while, she starts to get pretty fed up with this guy. They quarrel and bicker, and he becomes nastier and nastier when they fight. He takes it out on his kids, too, yelling at them when they do things like turn the t.v. up too loud or come home late for dinner.  His wife’s patience gets shorter and shorter, and she feels like she has to double-check everything he does. He used to be so reliable, but now he’s just not trying… What’s wrong with him?

At work, things are getting tougher, too. Car Accident Guy’s boss has been noticing how he’s not delivering results when he promises he will. The reports are late. The analysis is incomplete. And he’s started making stupid mistakes he doesn’t even catch till someone brings them to his attention. Even when folks do show him how he screwed up, he’s contentious and argues about it, and his relationships with his co-workers seems caught in a downward spiral. His boss tries to talk to him, but he can’t seem to sit still in their meetings, and he keeps changing the subject or talking about other stuff that has nothing to do with what they’re there to discuss.

All the while,  Car Accident Guy has been missing his daily blood pressure dose, and his BP has been climbing — especially when he’s angry. He seems even more angry than usual, in fact, and his wife finally prevails on him to see his doctor. When he goes to the doctor, his blood pressure is way out of control, and his doc becomes very upset with him for not taking his daily dose. The doc considers him non-compliant and lectures him, and Car Accident Guy takes issue with his tone and snaps back at him. The doc, who has had a long day and isn’t in the mood for this crap, puts him on notice that he’d better clean up his act, or else. Car Accident Guy is immediately sorry for the tone he took with the doctor, and he apologizes and promises to do better. Feeling self-conscious, he tries to listen to the doctor and get what the doc is saying, but he can’t seem to focus, and he loses the piece about needing to schedule a stress test in six weeks. He takes the new BP med prescription from his doctor and puts it in his shirt pocket — but he’s distracted by what the doc is saying to him, so he isn’t actually aware of which pocket he put the script in.

Done with the appointment, he sails out of the office, forgetting to make the appointment for the stress test, trying like crazy to recall — from memory — the exact content of the his visit, so he can be sure to get himself back on track.

When he gets home, his wife asks him how the appointment was, and he has trouble remembering. He tells her it was okay, but when she asks him what the doctor said, he can’t remember exactly, so he avoids her question. She senses he’s covering something, and she’s concerned that there’s something seriously wrong with him that he’s not telling her. She becomes anxious and starts to press him for details, which he cannot recall exactly. He snaps back at her, and the conversation escalates to yet another argument.

Exhausted and frustrated, he stomps off to bed, tosses his clothes in the hamper, and sleeps the rest of the day. While he’s sleeping, his wife does a load of laundry — including the shirt with the prescription in the front pocket.

When he wakes up, Car Accident Guy remembers he needs to take his BP meds, and he also remembers he needs to get his new prescription. He can’t remember where he put the script, exactly, but it must be in the clothes he was wearing at the doc’s office. Unfortunately, his shirt and pants have gone through the laundry, and the prescription is in soggy tatters in the washer. Furious with himself and furious with his wife, Car Accident Guy flies into a rage and verbally attacks his wife, his kids, anyone who is nearby. He drives off in the car, calling his doctor on his cell phone for a new script.

The doctor is noticeably irritated, and he thinks Car Accident Guy is not committed to taking care of himself. He writes another script and faxes it to the pharmacy, so his patient can pick it up. Car Accident Guy thanks the doctor and heads to the pharmacy, but on the way there, he’s distracted by a yard sale along the road. He pulls over and spends an hour and a bunch of money buying some pieces of furniture he doesn’t really need, but that look nice and are available for a good price.

He loads the furniture in his car and heads home. When he gets there, his wife is still angry with him, and she’s packing to go to her mother’s house with the kids. In the meantime, his anger has completely dissipated, and he doesn’t understand what she’s still angry about. He also can’t understand why she isn’t pleased with the bargains he found. She asks him where his prescription is.

“Prescription?” he asks…

That’s more or less a cause-and-effect narrative of what can happen, just from a couple “simple” problems like sleep disruption, distractability, and lower anger thresholds — all of which are common in TBI. Even MTBI (supposedly “mild”) can produce life-wrecking after-effects. Believe me. I’ve lived it. I know. Car Accident Guy’s story is not terribly different from my own, though my own circumstances are different — still, the types of problems mulitiple MTBIs have brought me are not that different from these.

It’s eerily easy to end up in a downward slide — in no small part due to sleep issues, which contribute to distractability, which contributes to frustration, which contributes to lowered anger flashpoints.

But in the same vein, being aware of the issues up front, makes it eerily easy to avoid situations like this.

Getting enough sleep is a start. Being mindful of your energy level is another. Keeping notes about what you need to do is yet another. And stopping to check in with yourself and double-check your work is yet another.

TBI, even mild traumatic brain injury, can totally screw up your life. The good news is, it doesn’t have to.

Quick – before the snow flies

I’ve had an increasingly pronounced sense of urgency about getting my affairs in order. Could be it’s the end-of-the-year rush, or maybe it’s this sense of immanent change, or perhaps it’s the realization that my life is changing — yet again — but this time it’s changing for the better, and I need to be more mindful of how I manage my resources and energy.

Since I began my neuropsych testing and evaluation, over a year ago, I’ve been acclimating myself to the idea that disaster is not necessarily a given in my life. I’ve realized that the head injuries I’ve experienced, the mild traumatic brain injuries I’ve incurred over the course of my life (beginning in early childhood), have played a direct role in the course of my life. I’ve also realized that with the knowledge of how my brain functions (or fails to function), I can devise strategies to offset the after-effects of MTBI, and plan alternative strategies. And with the proper amount of mindfulness, I can follow through with them in a certain what that can — and does — help me head problems off at the pass before they become the kinds of catastrophes I’ve coped with my entire life.

Yes, I now have tools to help me make my way in the world. And I need to get my act together, to match the level of my mindfulness-augmented competence.

So, I spent the weekend cleaning and moving. Saturday morning, I cleaned my study. Finally. It’s been on my to-do list for months, now. The last time I cleaned it, two years ago, the space felt truly amazing. I just loved being in my study (where before I had dreaded it). But it’s gone slowly downhill over the past few years, which I knew I needed to fix. So, I worked on that consciously on Saturday morning. And while I didn’t complete the task (which took over a week, last time I did it in in 2007), I did make a sizeable dent. And it’s a deeper sort of cleaning now, than I have ever performed in any of my study spaces.

I really focused on doing it mindfully — cleared out a whole bunch of old files, filled several grocery bags with paper to be recycled, dumped old damaged items that needed to be “liberated” a long time ago, and the proceeded to rearrange the contents of my closet. I still have a ways to go. I’m probably about 10% along the path. But the point is, I started it. (And I continued this morning, cleaning out one of my over-stuffed, disorganized filing cabinet drawers.)

Saturday afternoon, I moved leaves. Raked. Used the leaf blower/vac mulcher. Moved 7 large tarps’ worth of material off the front lawn. I may need to make another pass before the snow starts to fall, but if I don’t, at least I’ve made enough of a dent to protect the grass from the effects of acidic leaves over the winter months. I also moved summer items from outside to inside, and I also fixed the dryer duct, which had  become too clogged for the dryer to work properly.

I should have fixed the dryer duct years ago, but that was one of the things that fell off my plate, after I fell down the stairs 5 years ago. You wouldn’t think that hitting your head on a bunch of steps would completely derail your life, but after that fall, I stopped paying attention to the list of things that needed to be done. I’d had a list I was working with — we’d only been in the house two years, up to that point, and the series of things I was planning to do over the coming years was starting to become more manageable and less clogged. Then I fell, and I stopped working on the list. I’ve been working hard to get back, ever since I realized, about a year ago, how badly I’d let things fall by the wayside.

Now my life consists of a whole lot of remedial stuff. Recover stuff. Rehab stuff. Life as rehab. Each and every mindful minute of paying attention to what I’m doing — and why.

Every now and then, I also get the chance to help someone else out with their list, which is what I did on Sunday. A friend of the family is breaking up with their partner of 7 years, and they needed to move some furniture and reconfigure their living space.

My spouse and I drove out to their place and helped them get a number of large, heavy items out of their living room, as well as from upstairs to downstairs. When we got there, they were looking pretty ragged and depressed and overwhelmed. But by the time we left, they were a whole lot more relaxed and up, and they had their home office set up and connected, so they could get their act together. I’m glad we could help. And it felt great — after several months of regular exercise — to be able to lift and carry the sorts of heavy furniture we were wrangling. Recliners, with all that steel, are NOT light items to move. And trying to angle stuff through two narrow doorways was not the easiest thing. But we did it. And it was good.

This friend of ours (I’ll call them C) has been struggling with getting ahead and staying that way, for as long as we’ve known them.  They make progress, and then they make poor choices and slide back… Interestingly, back in high school and college, C played team sports — the kinds of team sports that frequently result in head injury. In fact, they told my spouse onetime that they had been hit in the head a lot, so their memory wasn’t the best. But whenever I bring up the topic if TBI  — with reference to myself, as I’ve told them about my history — they shut down and stop listening.

The other interesting (and a little tragic) piece of C’s story is that their ex-partner of 7 years was in a car accident within the last year, and they took to the bed with overwhemling fatigue, irritability, wild mood swings… and more. It sounded an awful lot like things were with me, when I had whiplash in the past. Their change in personality was eerily familiar to me.

I tried to talk to C a few times about the possibility of MTBI playing a role in the relationship’s degeneration. I said nothing about C’s athletic history, but I focused on the car accident. But C couldn’t hear it. They just blocked it all out. They refused to admit that there had been a real change, or that the change was physical and neurological, rather than psycho-spiritual. C is very much into “energy medicine” and thinks about health in terms of karma and past lives and energy. They think they can address substantive issues with affirmations and intention.

Which is a shame, because they might have been able to get some relief and/or come up with some alternative strategies, by addressing the physical and neurological after-effects of that car accident, and developed real-world coping mechanisms, rather than realinging their chakras.

Now, don’t get me wrong. I am a strong believer in chakras and energies and intention and affirmations. But I’m also a firm believer in the power of the brain’s neurology to wreak havoc with one’s life. I know the domain of the brain can be very scary for people — especially people who don’t have good insurance and/or can’t get decent medical care — but by leaving out that very important aspect of our overall health, problematic situations can escalate and become even worse, on down the line.

Unaddressed TBI issues can literally cost you your job, your home, your marriage… and more. Especially if folks avoid dealing with them up front.

TBI — even “mild” traumatic brain injury — isn’t the sort of thing you can necessarily wish away or “clear with intention”. I’m sure there are people out there who are very capable mind-over-matter practitioners, but as far as I’m concerned, it’s prudent to give the brain its due and not just brush off a brain injury as something that time alone will heal. Brain injures don’t just go away. And left unaddressed, they can cost you a lot that means the world to you.

I’ve experienced that myself… And I spent most of yesterday moving heavy things with someone who is experiencing it, as well. My aching back and joints can attest to it.

Well, at least we got things moved while the weather was still nice. And for all the hard work over the weekend, it feels great to be this functional again, after years of ennui and inertia and neglect. I feel like I’m really starting to get back in the game, in many ways. My life and my attitude and my outlook is very different than it was, before things fell apart in 2004-2005. But I feel like my life force is returning — and it’s actually good for something.

By the time winter comes, this year, I might just be ready for it.

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.

Using my head – for real

A while back, I was wracked with a sort of remorse. It was really sinking in that the way I worked before is not the way I worked now. I saw it more each day, on the job again with people whom I had worked with, 10 years ago. I am not the same person I was back then. That’ s for certain. My temperament tends to be more snarky and snappish, my attention span is shorter, and my ability to grasp and hang onto information over extended periods of time is very different than it used to be.

It’s a problem. ‘Cause this job and my ability to perform it is my bread and butter. And I don’t want to let the people on my team down. But I was having a hell of a time remembering the things I learned only a few weeks ago, especially when I hadn’t used them on a daily basis since I learned them. I was getting pulled off my past projects by new priorities, and I was spending more time testing and tracking and planning my work, than actually doing it. So the stuff I thought I had “down” about a month before, seemed like it had mysteriously evaporated.

It was a problem. It felt like a huge one. And I felt like I was spending all my time playing catch-up.

So that’s what I’ve been doing, lately. Catching up. It often happens that I  need to retrace my steps and redo my work, so I’m doing it once more. This time, though, I’m employing a different learning strategy than I used before. This time, I’m actually putting the learning into action by applying it to my workaday tasks — and working on a private project I’ve been designing for the past several months. This private project actually relates to my workaday world — it’s a special productivity tool I use to manage my strengths and limitations and constructively overcome the hurdles that get in my way, based on what I know about my own tendencies, and my inventory of strengths and weaknesses and coping skills that have worked for me in the past.

This is good. Not only am I integrating my whole life — personal and professional — in complementary ways, but I’m also creating new ways to master the new skills I need to acquire. Instead of just reading and making notes, like I did six weeks ago, I’m now using the new skillset I need to master.

It’s gotta be hands-on. Or I’ll never retain the new information.

It’s so wild, how I forget that. I’ve written before about how I learn best — by doing — and there’s a part of my brain that knows all about it. But putting it into action is the challenge. A big one. And I forget that I have to take a break, let the information sink in, and actually use it before moving on to “learn” something else. Instead, I keep reading. It’s not enough that I learn — and master — one single skill at a sitting. Oh, no — I must read and conceptualize more… and more… and more…

I’m not sure what it is — I think my hungry brain wants to race ahead and learn-learn-learn. It gets into this groove and instead of stopping to implement what it’s just read, it gets lazy or acclimated or lulled into a false sense of security, and when I’ve gotten to the end of one section or one chapter, it wants to jump ahead and read more stuff that’s new, different, interesting. It gets into this habituated flow and gets stuck in a loop. Especially when it comes to reading, studying, taking in new information.

That’s very unproductive, and it has a tendency to overwhelm me, before too terribly long.

But I can’t be too hard on myself over this. The fact of the matter is, I’ve had six weeks for the initial flood of information to sink in. It may feel like I’ve forgotten it, but when I get back into using the information I read about a while back, a little bit at a time, I can actually sense some familiarity with it. So, it’s not gone. It’s just tucked away in the back of my head, and I need to find a way to coax it out again into plain view, where I can put it to good use.

Here, again, is a great example of where my brain is leading my mind astray. It’s convinced that I’ve lost what I gained, some time back, and it’s ready to panic, run for the door, relegate me to second-class status. The mis-firing processes in my brain are interpreting this extended learning process as a sort of failure. Its artificially elevated standards say, “If you could really do a good job with this, you’d be proficient, by now,” totally underestimating the complexity and level of involvement required to do this new work I’m taking on. My brain gets turned around and confused and disoriented, so it thinks it’s lost in the wilderness for all time and is going to wither and die there like that kid from New Jersey who starved to death in Alaska, instead of it just being momentarily disoriented on a street corner in New York and needing to ask for directions from a passerby. It can’t immediately see a way through my passing frustration, so it thinks there is no way through. It can’t immediately access the information I stashed some weeks back, so it thinks it’s gone for good.

But here’s the thing — it’s not that I’ve lost what I’ve learned before. It’s that it’s filed in a virtual drawer in my head that I just need to find and open up again. I have learned, actually. It might not feel that way, but I have. And now I’m shifting into a different stage of my total learning process. All that reading and reading and reading without associated mastery isn’t a terrible thing. It’s not — I just have to realize that the reason I was reading and reading and reading before was different that what I thought it was — and it’s actually a lot more pragmatic and clever than I realized up till this point.

The real reason I was reading and studying like crazy before was for preparation, not execution. I was reading compulsively, not to master the material, but rather to familiarize myself with it, to get the feel of it, and to get myself to a point where I could listen to someone talk about all the topics and subjects and issues and aspects without being flooded with an overwhelming tidal wave of information overload… and eventual panic. Thinking back, I can remember many instances where conversations with my team members landed me in the middle of an emotional avalanche that totally shut down my brain. I just blanked. They were talking and talking about all this stuff, and I wasn’t able to keep up. So, I spent a lot of time reading about the things they were talking about. It was for the sake of putting my anxieties about verbal communication at rest, rather than implementing anything.

That first piece — the panic switch shut-off — was the first thing I had to do before I could move forward. I realize that now. And in its hidden wisdom, my mind devised this way for me to do just that — through reading and studying and familiarizing myself with the material before I started into all the doing.

So, actually, it wasn’t bad for me to spend all that time just reading and not doing. In fact, it wasn’t spending time, it was investing it. And now it’s paying off. Because I can sit through a conversation with people who are talking about stuff that used to be brand-spankin’ new and totally intimidating… and I don’t freak out.

That’s a good thing.

Yesterday was a wash

… Just about.

I had carefully made up a list of all the things I needed to get done — I’m on deadline at work, and it’s vital that I get the things done that I started, and that I do them on time. But I never checked my list until about 3:30 p.m., and then it was too late to do a lot of it.

I was just exhausted from the weekend — lots of activity and staying out too late. It was fun at the time, but it took its toll. And the people I’m working with are not pleased.

I’ve just got to let it go. I can’t start out today feeling bad about yesterday. It’s a new day. And I also have to remember that I’m not the only one in my group who’s struggling with work, right now. We all are, pretty much. We’re a challenged bunch of people with divided attention, conflicting interests, and way too much going on in our lives, overall. We’re also getting used to working together in new ways. There’s old bad blood that keeps people stuck, and there’s new opportunity to move forward. Main thing is, keep moving forward. But yesterday that didn’t happen nearly as much or as well as it should have.

I have to do something about this. I have to get out in front of my tasks. I know better than to do this. But the part of me that was playing all weekend wanted to keep playing, so I ended up messing up some stuff — and feeling badly about it.

More than anything, what takes the biggest toll is the emotional stuff. Feeling badly about myself. Feeling badly about how I’m doing. Feeling incapable and incompetent. And then, even if I’m doing okay by most people’s standards, my performance is thrown off even more. Because I’m feeling badly about myself and my abilities.

But it’s a waste of time to feel badly. My brain is just different now, than it was before my fall in 2004. It just has different needs and inclinations, which I have to factor in and accommodate/adjust to, if I’m going to have the level of ability that I desire. If I’m going to accomplish what I set out to, I need to use my tools — my planner, my notebook, my to-do list.

And I need to have just enough things on my list to keep me moving, without overwhelming me.

The thing about lists, though, is that I have to keep all the items I have on my plate (short- and long-term) in front of me in some way. I have to keep all my priority items in plain view, or I just forget about them. Other people look at my list, and they get all freaked out.  They tell me “It’s too much!” But for me, it works. I don’t mind all that stuff in front of me. I’d rather have it there, than forget about it — which is what I’ve done in the past … only to remember that I’d forgotten things I seriously needed to remember.

Until I find a way to remember everything — or hire a secretary/executive assistant to do the remembering for me — the stuff I need to do eventually is going to stay on the list.

But back to yesterday. What did I do which didn’t work, that I can do differently today?

  1. I didn’t check my list, first thing in the a.m. — I’ve checked my list for today already, so I’m good with that.
  2. I got down on myself for falling behind — I’m not going to do that today… get down on myself. I’m going to try the best I can, and leave the rest to fate.
  3. I thought the whole problem was me — I know I’m not the only one having issues. It’s just that the other folks I work with are really good at covering up their shortcomings and problems, and so of course (since I’m very open about the areas where I am lagging), I end up looking like the one who’s bringing everyone down. Matter of fact, I’m not — in fact, one of the reasons I’m behind on my tasks is that the folks I’m working with made a total friggin’ mess of it before, and nobody bothered to sort it out, till I came along and said, “This will never do!”
  4. I didn’t take time to plan my day and catch myself up — Today I am taking the train to work, so I can read and prepare.
  5. I let myself lollygag around in the afternoon, when I was tired –– Today, I need to pace myself and do at least something in the p.m, when I hit my low point (as I always do). If I plan for my lull, and I do something like walk around the office or take a break away from my desk when I’m tapering off, I may have better luck. There is a common work area I can go to that’s far away from my desk — I’ll try going there today and see if the change of scenery helps.

These are just a few of the things I can do differently today. I already feel better.

MTBI and mental health

I’ve been thinking a lot about how TBI (especially MBTI) can either masquerade as mental illness… or lead to it. Not being a psychotherapist, I can’t speak to the intimate details of what makes a person mentally ill, but being a multiple MTBI survivor, I can speak to my own experiences.

In my recent post The Disordered Life and the Need for Psychotherapy, I talked a bit about how my past therapy experience was perhaps not the most effective for me — or the most appropriate. And now I’m starting to think that maybe it did me more harm than good, in some respects. That constant plumbing the depths of my soul, looking for things to explore… well, that frankly wasn’t often a very productive experience. I’d end up in tears, 24 hours later, and I’d be turned around for days, confused about things and off-balance in my life.

Here are some more thoughts regarding the mention over at Get Real Results. Their text is in bold, mine is plain.

Many people who enter traditional psychodynamic psychotherapy do so because they are dissatisfied with their lives.

I got into therapy, because I was having an incredibly difficult time dealing with being a caregiver for a family member who had developed disabling health problems. They had been going slowly but steadily downhill for a while, their health problems worsening without being really addressed. They frankly refused to see a doctor for their problems. They wouldn’t even admit that there was a problem. I had tried to soldier through with them, stick with them, no matter what, and be loyal and helpful and stabilizing. But ultimately, they ended up in the hospital, where they were properly diagnosed and put on a recovery regimen. They were unable to do much of anything for themself, so I took time off from work and helped them get back on their feet. During that time, I was the only caregiver for them, and due to circumstances that are way too complicated to go into here, I couldn’t ask friends of family for help. Only a few were available to me, and then in a very limited capacity. Basically, I was holding the fort down for the two of us, and I was getting increasingly frayed… and incapable of dealing with the situation in a productive manner. My temper got shorter and shorter and increasingly explosive, I was melting down (in private), occassionally self-injuring to relieve the internal pressure, and becoming more and more PTSD-y. It was just not good. I was getting worse by the week, and it was starting to get dicey for the person I was supposed to be caring for. I knew I was supposed to be doing better than I was, and I couldn’t figure out why I was so fragile and inept and having such a terrible time of things. A friend pushed for me to get into therapy, and they found me a seasoned therapist they thought would be a good match. I decided to give it a try.

Their dissatisfaction may be due to being unsure of themselves, goals that are not clear, inability to accomplish what they want, unsatisfying relationships, anger or fear, or they are depressed.

I really didn’t know what was going on with me. I was having a hell of a time understanding what the doctors were telling me, remembering the info I was getting, and if I hadn’t had us all on a very strict schedule each day, with extra attention paid to nutrition and exercise and the most  basic of needs, we all probably would have spun wildly out of control. Friends who knew about what was  going on would would ask me what I needed, but I had no idea. They would try to talk to me about the situation and give me some support, but I coudn’t seem to access anything useful to tell them. I could discuss high-level things like medical research. I could talk about basic stuff like eating plans. But when it came to regular human interaction and talking about what was going on with me, I was at a complete and total loss. People would ask me what I needed from them, and I couldn’t answer. I literally didn’t know. All I knew was, I was locked on target to keep everyone in the household going, and keep my care-take-ee on the road to recovery.

Hoping to find out what was going on, I went into therapy. I really didn’t know what to expect. I had tried therapy years before, and it ended badly. What I did know was that I was wearing thin, I was melting down, I was not holding up well, and I didn’t know why. I needed someone to help me figure it out — and hopefully address it.

Psychotherapy offers them a chance to explore their feelings and past, uncover and resolve the conflicts that interfere with their lives, vent their frustrations, and get on with their lives.

Oh, yes… the exploration of the past… My therapist was really into that. They wanted to know what my parents were like, what they’d done that was awful, what my childhood environment was like, etc. Granted, my early childhood was not easy — I didn’t see much of my parents in my early years, I was in childcare during most of my waking hours, and when I did see my parents in the evenings or on the weekends, they were busy working around the house or they were occupied with concerns other than me. And the times when I did interact with them, I often had troubles. We would start out pretty good, then eventually things would go south, and I’d end up melting down or being disciplined for something I’d done. I had a lot of sensory issues when I was a kid — touch felt like pain a lot of times, and I had a hard time hearing and understanding what people were saying to me — so the “easy” times were a bit more complicated than one might expect.

Anyway, my therapist apparently had a lot of interesting material to work with, ’cause my childhood as I reported it was such a tangled mess. And my teen years and early adulthood weren’t much more straightforward.  Let’s just say I’ve had an eventful life. A non-standard life. A unique experience. I often got the feeling, during our sessions, that they were trying to uncover something really awful that would explain why I was such a wreck.

I have to say, I wasn’t always comfortable with that dynamic. It seemed to me that they were making some assumptions that just didn’t “sit right” with me. Looking back honestly and truthfully — and I’m not afraid to look at bad things that have happened, to me (even though I’m not usually comfortable talking about them with others) — I just couldn’t find any evidence of the kinds of abuse that are usually associated with intense PTSD. Sure, there’s that whole “repressed memory” thing, but I’m sorry, I just wasn’t feeling it. My diagnostic neuropsychologist concurred (on their own steam) that the difficulties I face are not psychological in origin, rather TBI-related, and even before I started the neuropsych testing, I had a strong, undeniable sense that the problems I was having with keeping up with everything around me were NOT just about stress, were not just about an unhappy childhood, were NOT based in psychological problems, but had some other origin. And I had to figure out what that was.

I suspect that hard-core psychiatric/psychological “team members” are going to turn their noses up at this, but you have to understand — I have spent 30-some years specializing in exploring the innermost recesses of my psyche. I’ve got countless journals filled with self-exploration to prove it. I’ve peered into dark corners on a daily basis for decades, and I’m not afraid to confront my demons. Seriously. I’m not. And when I took a long, hard look at the chronology of my childhood and teen years and early adulthood… and up to the present time… and I compared it with the chronology of my regular-functioning siblings… and I compared how I wanted (and tried) to  behave and experience life against how things actually turned out, well it was pretty damned clear to me that there was more than psychology at work.

There had to be a logistical, systemic issue at hand that hadn’t been identified or dealt with. My difficulties stemmed — it was pretty clear to me — NOT from things that were “done to me” but rather how I interpreted and experienced the events of my life. My siblings had gone through many of the same things I had — some of them had gone through much worse — and yet they presented as (and were/are) perfectly normal. Ironically, my siblings are — in the estimation of people who know both me and them — a lot less “together” than I am. But they are/were a whole lot more functional in the most basic ways — particularly socially. They knew how to identify and communicate to others what was going on with them and what they needed in tight spots.

I, on the other hand, had my act together in many ways that they never have, and was a super achiever with a good head on my shoulders in many respects, but in others, I was just a train wreck. I had always had a hell of a time figuring out where I stood in relation to the world around me, what I was feeling, what I was thinking, and what I needed from others. And while the experiences I’d had as a kid were not unlike what others went through, I took everything incredibly hard and couldn’t deal with much of anything. Change was all but impossible for me to stomach. I took any alteration — expected or unexpected — very, very hard. Some changes I took so hard, I apparently blocked them out from my memory, and I only know about them from my parents. Social interactions were pretty much a lost cause with me. Indeed,tending to the most basic things in life were next to impossible… like following conversations, being able to follow through with the easiest of tasks, playing simple schoolyard games like kickball and four-square, interacting with others, and keeping my act together without melting down or going off on wild hyperactive sprees. I was alternately aggressive and emotionally hypersensitive, and I spent a whole lot of my childhood and youth being extremely angry and bitter, and acting out in various ways.

Now, plenty of mental health professionals could probably come up with some workable explanations for all of this, and they’d probably be right. I’m sure plenty of people would have difficulty with what I experienced. My siblings still struggle with the aftermath of similar experiences. But not to the degree that I did/do. In fact, it was the degree of my difficulties that tipped me off that there was something more going on with me. When I took an honest, truthful look at my life experiences, and I compared the outcomes with other comparable individuals, I could very plainly detect a significant difference in degree that — I’m sorry — can’t be explained as trauma or post traumatic stress or even the changing times I grew up in. There was something more going on, which complicated things then. And it was continuing to complicate things for me in the present.

Unfortunately, although many head injured persons fit the above description and thus get sent into traditional analytic or psychodynamic therapy — they often get worse, not better, to everyone’s dismay.

OMG – I wish to hell I’d read this a year ago. It explains so much. Lemme tell you, it’s no friggin’ fun sitting there, week after week, sometimes twice a week, trying “like crazy” to figure out what’s amiss, and why… to be following the standard protocol of plumbing the depths, trying to come up with examples of past distress, trying to identify what’s going on with you… doing what you think (and are told) is the right thing to do, therapeutically… only to be an emotional wreck for days afterwards. And be getting worse, not better.

That’s what happened to me. I wasn’t becoming more centered and together.  I wasn’t better able to cope with the stresses of my life. I was actually having a harder and harder time of it. And I was starting to doubt myself at every turn. I was starting to doubt my judgment, my ability to cope, my sanity. I would sit there for that 50 minutes or so, trying to come up with some examples of what I was feeling or what I had experienced, only to come up empty-handed — and feeling pretty stupid in the process.  I would try to figure out what I was feeling, how I was impacted by such-and-such an experience, what others and said or done that upset me… and try to feel my feelings in general.

Therapy was supposed to help me make sense of things, and in some ways, it did help to have someone to talk to. But it helped me most when I was just talking about my life and not processing it all in a psychotherapeutic context. When I tried to “therapize” my experience, I just ended up feeling stupid and incompetent and beset by all sorts of self-doubt. I often couldn’t follow what my therapist was saying to me, and I could react quickly enough to get them to slow down. I would rush through my sessions with them, just saying out loud what I thought should be said, rather than letting on that I wasn’t following and I wasn’t  articulating what I wanted to articulate. I was so embarrassed that I couldn’t put into words what was going on with me — and in fact, I couldn’t figure out what was going on with me — that I spent an awful lot of time spewing stuff that wasn’t necessarily accurate or reflective of where I was coming from. I had always had such a hard time interacting with people — especially in spoken conversation — I just couldn’t deal with the talk-therapy scene in a really authentic way.

I knew this on some level, though I couldn’t yet put my finger on it, and it made feel like a total fraud and a loser — both because I couldn’t seem to do better in our interactions, and because I didn’t know how to ‘fess up … and do something about it.

As a result, a lot of the problems I was having became even worse, and I started to blow up and melt down and make really stupid choices over and over and over again. I went through three or four jobs in the time I was in traditional talk-therapy, and I was stressing to the point of having spells/episodes that looked a whole lot like seizures of some sort.

Not good.

This happens because the disorder in their lives reflects not primarily underlying psychological conflicts, but the damage to their brains that has resulted in cognitive and executive dysfunctions.

Amen to that. I couldn’t for the life of me figure out why I was screwing up, left and right. I was getting in touch with my feelings, I was feeling them. I was talking about my difficulties. I was releasing old hurts. I was doing what was supposed to be done — or so I thought — but my life was still on a collision course with… well, me. I was making all sorts of bad decisions, and my therapist gave me room to “explore” them as I wished. The only thing was, the decisions put me on a really bad path to some serious professional peril — and I wish they’d spoken up and corrected some of the shitty thought processes that were in play. I wish they’d challenged my thinking on a bunch of subjects. I might not have made the choices I did, and done the stupid-ass things I thought were such good ideas at the time, if they’d just questioned me more closely … with the understanding that my brain tends to misfire at critical times. I was cognitively and executively dysfunctional in some pretty significant ways, but they approached my difficulties from an emotional point of view, rather than a logistical one. They seemed to think that if I just had a better sense of self, and if I overcame my low self-esteem, I would be able to get my life back on track.

Uh…. NOT. Self-esteem has nothing to do with any of it. Nor lacking sense of self. It’s basic system issues that plague me. If anything, my sense of self is my strongest suit, and my self-esteem is for the most part quite intact. But all of my self-regard is useless, if my brain is misfiring and giving me wrong bits of information about what I should do with all that self-esteem and identity stuff.

This has gotten me in trouble more times than I care to think about. I swear… I’ll be feeling really strong and good about how I can do anything I put my mind to… but I won’t realize that fatigue is getting the best of me, and I’m missing cues and clues about what’s going on in the world around me. And I’ll screw up the job I’ve started — like a spreadsheet of numbers I’ve collected, or a piece of programming code I’ve written. I won’t muck up because I don’t feel good about myself, but because I didn’t take the time to walk through the steps of the job I’m doing… and I’ll screw it all up, miscalculating and end up with the wrong answer entirely. Broken program. Wrong numbers. Messed-up results — not because I lack self-esteem, but because my form was crappy.

Low self-esteem wasn’t the source of so many of my problems. MTBI was. Low self-esteem was an effect of the underlying problems — not a cause.

My old therapist also seemed to think that if I looked too closely at the ways in which I was deficient, it would take a toll on my self-esteem. If I explored the details of my screw-ups, I’d get down on myself and lose ground, psychologically. Untrue, untrue, untrue. It was in NOT looking at how I was screwing up, that I got into trouble, because I could never correct my mistakes so I’d do better the next time.  They spent a whole lot of time trying to reassure me that “I could do it”, without empowering me to actually do it in the way I needed to. Actually, I couldn’t do it — at least, not without help. There’s no shame in that, but the way they went about things, they actually made me feel as though there was.

Their lives are disordered because their brains are disordered.

Uh, yah. And acting like I was cognitively and excutively intact, was a huge mistake. For them, and for me. I guess I just didn’t grasp the extent of my difficulties, nor did they. They seemed to think that my lack of initiative stemmed from emotionally based depression, rather than a physical slowing of the brain processes… that my difficulties socially came from low self-esteem, rather than a long history of mucked-up relationships that stemmed from behavioral issues that began around the time of my first TBI and got worse with every successive one. My life, while full and whole and complete and highly functional in some ways, was in a total shambles in others.  It seems to me that that should have raised a flag of some sort — why does someone who is such a top performer and peak achiever in significant ways, also show such profound deficits in others? It’s not emotional in nature and origin. It’s neurological.

“Talking things out” does not solve the problem and may worsen it.

Which it did for me. Talking just made everything worse — it was all talk, no action, and if I talked about my difficulties, their main approach was to reassure me that I was an okay person (which I already knew!) rather than encourage me to deal with the logistics.

This is because traditional therapy removes structure and encourages the spontaneous expression of whatever thoughts and feelings seem most important.

Yet another contributing factor. OMG — can I tell you how many sessions I just rambled on and on without any particular direction? It may have seemed like giving my emotions free rein was a good idea, but they clearly didn’t know how capricious my brain can be around thoughts and feelings. Without structure and purpose, all that cognitive energy just went flying all over the place, leaving me even more confused than before, in many ways. Which did not support my mental health.

Such a process is guaranteed to lead to further disorganization and confusion in a person whose major problem is structuring and organizing the thinking processes, while trying to keep surges of emotion from washing everything away entirely.

Amen to that. Now I can see why my present therapist, who is a neuropsych by training, is constantly steering me away from the emotional exploration I became accustomed to. This new therapist (NT) takes a totally different approach from my Old Therapist (OT), and I have to admit it confused me at first and made me angry and disoriented. I was accustomed to therapy being about venting and “releasing”, but NT was focusing on logistics. And steering me away from overly emotional responses to every little thing (which had been encouraged by OT before).

When individual “therapy” is a successful adjunct to a rehabilitation program, it is a structuring, supportive, problem-solving approach.

And so it is — this new approach with NT is so much more helpful to me. And to everyone around me. My family members have commented that I’m doing a whole lot better, now that I’m seeing NT, and I can tell a huge difference. NT is very supportive, but they don’t let me get away with crappy cognitive processes, and they make me stop and think things through before I take action I’m talking about. They’ve already “talked me back from the edge” of doing something really stupid, a number of times. And this in only a few months. Plus, they’ve talked me through some wrong assumptions and bad information I was working off of, for nearly 20 years. They are talking me through thought processes that have been deeply flawed — yet rote — for decades, now. And I’m revising my perceptions in the process.

That’s just huge. And it’s something that I, as an MTBI survivor, need desperately. I need to be stopped and questioned and challenged. Even if it makes me uncomfortable and mad. I need to be forced to think things through in a careful and deliberate way, not just fly into situations thinking I can do everything on reflex. I can’t. I’m not sure I ever could. But this is the first I’m realizing it fully.

But at least I’m realizing it now. So I can actually do something about it. And make some real progress!

This does not mean that head injured persons cannot have mild or severe psychological problems that either result directly from, or exist (usually existed) separately from the results of their injury.

In my case, I would say that a fair number of my psych issues have stemmed from my long history of screwing up due to MTBI problems. There’s only so many false starts and cock-ups you can commit, until you start to be convinced you’re an idiot and don’t deserve a full and fulfilling life. There’s only so many relationships you can blow away, before you start to think you’re unfit for society. And having people make fun of you and bully you and ostrasize you and tell you you’re lazy and stupid and slow and whatnot also takes a toll.

I’m not complaining and I’m not crying boo-hoo.

I’m just saying…

They can, and often do. It does mean, however, that the traditional psychodynamic approach seldom offers the head-injured person relief from their disordered life.

Yes to this. To get relief from my disordered life, I need specific coping strategies and tools in my “toolbox”. After I’ve stopped making a mess of everything I touch, I can start to rebuild my self-esteem. But not before then.

The psychotherapist who specializes in brain injury must have an appreciation of the impact of brain damage on the patient’s capacity to benefit from the process of therapy.

Which my OT didn’t, I don’t think. At least, I don’t think they understood just how deeply I’d been impacted by a lifetime of injuries and the resulting effects.

Rehabilitation professionals should seek out such specialists if their clients require psychotherapy.

And clients should do the same.

I’m really hoping that this post has offered some food for thought to therapists and clients alike. It’s just so important, and there are so many critical considerations to go into this.

If TBI isn’t considered fully in therapy, the process itself can wreak havoc in an already disordered life… making things worse in the process. Folks may disagree with what I’ve said above, but that’s just my own experience and perception.

Therapy should be helpful. I think we can all agree on that.


It’s been a rough 24 hours

My fatigue and stress levels are catching up with me. And it doesn’t help that I have been on prednisone for the past week, to bring down inflammation that was kicking the crap out of me for a while.

Yesterday, I thought I was having a pretty good day. The weather wasn’t as great as I’d hoped, so I wasn’t able to get out and about like I’d hoped I would. And I didn’t get a bunch of stuff done that I had planned. I had something of an outline for my day, and I really didn’t get as much of it done as I’d hoped.

So, big deal, right? Well, actually it was. I had a TFM — Total Friggin’ Meltdown — last night, that started around 7:00 and lasted till midnight. Not good.

I have been so tired, so stressed, so agitated and nervous about my work situation and my impaired work-life balance and trying to find my footing with my new job and new schedule, trying to figure out how to pay for the commute and lunch and the rest of my life… Routine is about the only thing that keeps me sane. It may sound boring, but routine lets me operate at a very high capacity, and it lets me get through my days without having to think and re-think everything I do.

I have a tremendous amount of energy, which is great. It lets me accomplish huge amounts of work, without frying my system. But when I can’t direct that energy appropriately, when I get jammed up and stopped up, when I can’t “get my head” and get free rein, then I start to implode.

That’s what happened last night. I was supposed to do a bunch of things with a family member who has been feeling poorly, lately. We were supposed to go out and run errands and get some stuff done. We could have, too, except that my family member wanted me to take their sweet old time and just enjoy each moment, instead of getting things out of the way, and then relaxing. They wanted to amble and ramble and not rush… to just savor each moment and enjoy the springtime, chat with people, look around, just enjoy the time we had together.

I wanted to, too. I started out wanting to, with a really positive attitude. Thing is — it occurred to me at the time, but I dismissed the thought, and now I realize how right I was — I got completely overloaded with the sensory input and there was literally too much information coming in for me to process. The spring weather, changeable as it was… the sights, the sounds, the movement in town… the sunlight that was brighter than I’d expected (I left my sunglasses in the car)… the tastes of the food we ate… the words of the people we talked with… the total sensory input all proved to be too much for me.

I tried to shake it off and chill. I went for a little walk by myself to calm myself down. But I was really tired and wasn’t thinking well, and the walk wasn’t as relaxing as I was hoping it would be. When I got back to my family member, they wanted to go home right away because they were starting to feel bad again… then they wanted to stop off and do some more quick errands… then they wanted to get a DVD… then they wanted to take another detour… all the while, I was thinking they needed to go home to rest, because they were feeling sick, and I didn’t want them to feel any worse than they already did.

I was tired, myself, and I was trying to keep it together, but all of a sudden, it all bubbled up and blew up.

I just snapped. Yelled. Really yelled. Raged. Flipped out. Threw things. Accidentally hit them with what I threw, too, when I was trying to miss. I took off in the car too fast and I wasn’t driving very intelligently. Then I pulled over and said I would just walk home – they could have the car, they could have everything. I didn’t care. I was just beside myself with overwhelm and confusion and frustration and sensory overload. The whole time, there was this part of me watching from a distance, wondering what the hell I was getting so worked up over, and why was I being so extreme? Didn’t I know this family member wasn’t feeling well, to begin with? And here I was, flipping out on them… over what?

The whole danged episode lasted through most of the evening. And it left me feeling like crap. Without getting mired in the details, it pointed out pretty clearly that I need to watch my energy, I need to keep up on my sleep, and I need to make extra efforts to take care of myself, especially when I’m taking care of others. I need to wear my sunglasses when I’m out and about in the sunlight. I need to take frequent breaks when I’m walking around in town. I need to keep to something of a routine and make sure I do at least some of the things I feel I have to get done — or come up with an alternative plan. I need to step away, and take a break to calm down, too, when I start to get out of control. I need to do better at this, for sure.

Lessons learned. I only wish I’d gotten a clue earlier.

Moment by moment – on mindfulness and TBI

About a year ago, I had a conversation with a friend who was wondering aloud how I manage to get through life with the deficits I described to them. I had just finished telling them about my memory problems, my cognitive processing problems, my physical problems, the troubles I had when I was a kid… I didn’t hold back, but just let it all hang out. And when all was said and done, it was a lot to process, even for me (who’s been living with all that for as long as I can remember).

One of their first questions, when I’d finished, was how the hell I managed to get through life? How did I do it every day? How did I manage to make it through so many “regular” situations… not only adequately, but in fact better than many? For years, I’ve worked in high-stress, high-pressure environments that have one crisis after another. For decades, I’ve experienced job changes, moves from one part of the country to another, serious health problems that felled family members, deaths of close relatives, career insecurities, near-eviction… How did I manage to keep it all together, and actually look even more functional than others, who have not had brain injuries?

It sounded a little hokey when I said, it but the first words out of my mouth were, “Mindfulness. I just pay really, really close attention to each moment as it comes.”

At the time, I wasn’t sure that was really 100% accurate. And when I thought about it, over the coming weeks and months, I came up with a whole bunch of other ideas for how I get by:

  • mimicking others who seem to have it all together
  • being silent instead of speaking up and showing my limitations
  • hanging with good people who care about me and can help me
  • learning to ask for help in ways that don’t make me look stupid
  • learning to be stoic under any given situation, and then falling apart when I’m out of sight of others

The list goes on, of course, and the more I think about it, the more coping strategies I can come up with.

But once I got tired of thinking how else I manage to get by, I came back to my original thought, which was correct:

I get by in the world, head injuries and all, by paying really, really close attention to each moment, and living the very best that I can in that moment.

Throughout the course of each day, countless situations arise which enable me to learn more about myself and be true to that moment.

People approach me for help or input. I can choose to pay attention to them, really get what they’re saying to me, and respond to the best of my ability… Or I can pretend to listen to them, brush them off, and go back to what I was doing before.

People interact with me in stores and public places and at work. I can choose to be pleasant and polite to them, or I can be rude and impatient and make them sorry they ever met me.

Opportunities arise to make choices that will change the direction of my day. Will I dress up for work, or will I dress down? Will I take back roads to work, or will I take the freeway, or will I take the train? Will I slow down when the traffic light turns yellow, or will I speed up?

Every single choice I make through the course of each day has the potential to change my course in good ways or bad. And every action I take is both informed by my neurological profile and affects my personal relationship with my brain. It’s a two-way street. I have to both factor in the issues I have with my broken brain when I decide how to act… and deal with how my perception of myself alters, based on the outcomes of what I chose to do before.   If I neglect the former — e.g., don’t bother to remember that fatigue is a huge issue for me, and it’s impacting my ability to think and coordinate my movements — then the latter can suffer — e.g., I’ll get really down on myself for being dumb or dense or uncoordinated. Even though I know I’m somewhat impaired, I still get down on myself for doing/saying/choosing things that were better left alone. And that takes a toll… like water dripping on a rock and eventually eroding a virtual Grand Canyon through my self-esteem.

Mindfulness matters with me. Perhaps moreso with me than with other folks who are neurologically normal. Because if I want to live my life to the best of my ability, I don’t have a choice, but to force myself to be mindful. When I’m racing through my days, not paying attention to my limitations, not being mindful of where I am and what I’m doing, unfortunate things tend to happen. I rub people the wrong way. I say things I shouldn’t. I get pulled over by cops. I bump into hard/sharp objects and bruise myself. I get snarky with authority figures and alienate my supporters. I tend to end up in hot water, and then I feel just awful. I start to doubt myself. And when I doubt myself and my self-confidence takes a hit, I have a harder time just living my life later on.  Even the most basic activities can become a difficult chore, when my self-confidence has taken a hit… they’re hard enough, as it is, without the added burden of screwed-up self-confidence.

But when I slow down and focus on the present moment… When I’m totally involved — to the best of my ability — in what I’m doing, what someone is saying to me, what is happening around me… When I manage to block out everything else around me and focus wholly on what’s right there in front of me, magic happens. I become involved in my own life. I am able to see, feel, hear, and experience all-round the situation that has presented itself to me. When I can manage to stop the rest of the world from intruding, and I can slow down the action enough to devote my full attention to what’s going on in that moment, at that specific place in time, I can turn the full force of my abilities towards it, and be true to it.

Now, looking around at websites about mindfulness, I’m finding a lot of mystical stuff. Enlightenment stuff. Claims that mindfulness is the path to Buddha-hood. A cure for psychological ills. A cure for the soul. I don’t know about all that. I think that mindfulness is certainly a key part of becoming a fully conscious individual. But in my case, mindfulness isn’t something optional that I add to a personal spiritual practice for the sake of additional help. It’s a central and esential part of my day-to-day coping strategies, without which I’d be totally sunk. If enlightenment comes along with it, then great. But I’ll settle for basic functionality.

And that’s exactly what it offers me. Because when I’m not paying attention, when I’m not cognizant of the fact that I’m overly tired, when I’m ignoring the fact that I’m getting more and more agitated, bad things happen. I lose my cool. And when I lose my cool, I blow up. When I blow up, I say things I don’t want to be saying. I say things I don’t really mean. I break things. I throw things.  I flip. Trust me, it’s not pretty. And people close to me are occasionally afraid of me, which does not feel good. Ultimately, I start to close down, shut people out, stop communicating with them, start to get down on myself… and I slide down in that sinking spiral… sometimes into total and utter despair. The cost to myself and those around me is very high, when I’m not being mindful and paying attention to what’s going on with me.

But when I am paying attention and I’m aware of where I am and what’s going on with me, I can manage my limitations. I can see that I’m tired, and take a nap. I can see that I’m not following what someone is saying to me and either ask them to clarify or make a note (a real note on paper, ’cause I’ll forget mental notes). I can tell that my attention is wandering and bring myself back to the moment. I can see that I’m starting to lose my cool for no good reason and physically remove myself from the situation – walk away or even run, do something different, or just stop talking. I can prevent myself from going off the deep end and overreacting to what others are doing and saying. Just reminding myself that I’m  being “very TBI” at the moment chills me out. I can remind myself that my brain is misbehaving and I’m probably getting overwrought for no good reason. And I can stop the downward slide before it starts.

I cannot even begin to say how important this is. For myself, and for everyone around me. It means the difference between being a good partner and being a vexation (and sometimes a threat) to the ones I love. It means the difference between having a conversation and having a fight. It means the difference between finishing a thought and taking a definitive action, and getting mired in bogus details that keep me from going anywhere. It means the difference between being a TBI victim and a TBI survivor.

Mindfulness is not just an optional practice for me. It’s not something I can do now and then, when the spirit moves me or I’m in a meditation session. It’s something I absolutely positively must do all the time, in order to meet the most basic requirements in my life.

The beauty part is, because mindfulness is such a powerful practice outside of basic coping, it enables me to do the most basic things with tremendous focus and energy. Taking one small thing at a time, focusing fully on one moment at a time, allows me to use the full range of my abilities on that thing, in that moment.

And in so doing, my life becomes more than just a series of limitations to be dealt with. It becomes more than just a sequence of chores and tasks and obligations. It becomes more than work, work, and more work. My life — through mindfulness — becomes a form of worship. It becomes art.