Getting better… getting worse – life resumes years after tbi

Balance scale
It's all about the balance

Had a great trip down to see family, this past weekend. Truth to tell, I was a bit apprehensive about it all – there was a LOT of driving involved, and multiple family units, some of whom I have not seen in decades (not all of them friendly, the last time we spoke)… all on top of a seemingly unsustainable lack of sleep. Between the driving and visiting and events, there was simply no way I could have gotten 8 hours each night.

And sure enough, I didn’t.

But it all turned out alright, in part because I was prepared for it. I knew I was going to be tired. I knew I was going to be “behind” on my sleep. And I monitored my behavior pretty closely for the duration, to make sure I didn’t get ahead of myself and start down a road that would mess up my whole trip.

Only twice did I get out of hand – once when my siblings kids were disobeying their parents and doing something that was potentially dangerous, and my siblings were not pro-active at all and didn’t get them in line for their own safety. I spoke up sharply, and I think I scared the kids. But it kept them out of danger. And my siblings got a little miffed that I said anything to the kids. That kind of threw me a little bit, because in years past we’ve had a lot of confrontations where I acted out and was pretty aggressive with people around me, and they all remember that — all too well.

So there was the old “vibe” about “BB is up to their old tricks again – they just can’t be trusted in polite company – just a bad seed” that I had to work so hard to overcome in my mind over the years. It threw me for a couple of hours that morning, but then I went to lie down for a nap, had a little rest, and then I got up feeling a little better. But when I joined everyone else, I was still out of sorts, and I had an argument with my spouse that got very tense. They were also on edge, because my family can be very demanding and judgmental and pretty rough on everyone, and my spouse has never been comfortable with that level of harshness in family settings. They think that family should unconditionally support one another, while my family thinks that it’s the family’s duty to find fault with and correct each others’ “flaws”.

So, we had a bit of a squabble that day. We weren’t the only ones, though. My siblings were all having trouble with their spouses, and at various points, they were all split off in different rooms, having “talks” to sort things out.

But at least we did.

So, things actually went okay, for the duration of the trip. And I had some good conversations with family members.

One thing I noticed, however, is that my “flashpoint” is higher than it used to be, but it’s more powerful. The things that used to always set me off with my family didn’t affect me as much as they used to, but when they did hit, my reaction to them was much stronger than in the past. In the past, the discomfort and issues would simmer in the background and be like this sub-text of my experience. Now, however, they just bubble right up to the top and explode. Not as extremely as they used to, when I was a kid, but still…

Just ask my spouse. It’s a wonder I didn’t threaten divorce in the course of our conversation. I thought about it. Seriously. And I was prepared to go through with it. But when I gave myself some time to simmer down and chill out, I saw how ridiculous I was being. I wish I could say I had a good laugh about it, but it bothered me. I knew I was being stupid and ridiculous, but it wasn’t amusing to me. It was bothersome.

So, in the after-hours since getting home late-late-late last night, I’m looking back at the weekend, choosing how I will think about it. I could choose to focus on those two stages of a near-meltdown and think the whole time was ruined by them. Or I could focus on all the really great times I had with people I haven’t seen in years, who genuinely care about me and were very loving and engaging, despite my troubled past.

I feel in a lot of ways, as though my life with my extended family has “resumed”. For many years, I kept my distance from them because I had so many troubles communicating with them, and I felt like I was always getting turned around — and that really upset me. People in my family “knew I had problems” but they didn’t understand why that was, and they often didn’t treat me well. So, I kept my distance. Or when I was with them, I didn’t come out of my shell very well.

I was literally a captive of my perceptions of myself. I felt like I was too “problematic” for them, and they probably picked up on that and treated me accordingly. I sort of have this reputation in my family as being a bit of a loser — plenty of potential, but somehow lacking the moral fortitude to do anything with it. That reputation has dragged me down so very much, and in the past, I didn’t have much hope of interacting well with them, so I never gave myself a chance to just be who I was with them.

That has changed dramatically, however, in the past several years. Working with my neuropsych, they’ve just about convinced me that I’m not profoundly, mortally flawed and an intermittent danger to myself and others. I’ve been learning to give myself a chance around people, engaging with them, striking up conversations and interacting in healthy, productive ways. And I’ve been really gingerly resuming contact with people who I’d steered clear of in the past.

Now, it hasn’t been easy going. It’s been touch and go, and I’ve actually backed off on a lot of social interactions that I once had. I’ve stepped away from a lot of old friendships and acquaintances, to keep myself sane and centered. But sometimes I’ve distanced myself from people just out of laziness. And a desire to withdraw, isolate, and do my own thing without having to work with others. That has not been the biggest improvement in my life.

And yet, it serves its purpose. When it comes time to interact with people, I’m far less depleted. I am aware of my challenges, and I take proactive steps to deal with them. Being aware helps. So long as it doesn’t hold me back. Fortunately, this past weekend, it didn’t hold me back very much, aside from a few blips in the road.

I would like to get to a point where I can freely interact with people, connect, and just have a conversation… eventually building up friendships.  I’m not quite there, yet. I think this is one way I’ve slid back over the past few years, while I’ve advanced in other ways. I think I’ll get there, eventually. Maybe sooner than later. But I’m not quite there yet.  Sometimes I get down on myself, thinking I should be farther along. These things take time, though. It will come.

I guess this is just how it is… Steps forward, steps back. TBI is never easy, and it has its share of surprises. I’ll count my blessings that I had such a good weekend and such a good time with my relatives. Right now, that’s what counts.

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Therapy + TBI = Disaster

"My therapist told me the way to achieve true inner peace is to finish what I start. So far today, I have finished 2 bags of M&M's and a chocolate cake. I feel better already"

I’d like to propose something controversial here that probably won’t be well-received in psychotherapeutic circles. I’ve said it before, I believe, but I’m going to say it more emphatically now. Someone recently commented on another one of my posts, right when I’ve been thinking about it a lot, so I’ll say it again:

Therapists/mental health counselors (without a strong grounding in neurological information) are about the last people who are able to effectively deal with mTBI. And in the early stages of recovery, seeing a therapist to “figure things out” can do more harm than good. Much more harm than good.

It’s unfortunate, and I hate to say it, but I believe it to be true, based on personal experience with therapists and with friends/acquaintances who are therapists. What I’m about to say comes from years and years of observation, and no matter how seriously therapists may question my point of view (after all, I might be mentally impaired), I still believe it and I stand by it.

See, here’s the thing — TBI seriously screws with the functioning of your brain. Even a “minor” concussion and shear and shred axons and synapses and all those connectors that you’ve built up over the years to learn to live your life. Plus, it releases interesting chemicals into the brain that kill cells. Don’t be alarmed – the brain is a marvelously resilient organ that ingeniously figures out how to re-route connections, recruit other parts of the brain to do the jobs of parts that can’t do it anymore, and generally adapts to changing conditions in ways we are only beginning to recognize and understand.

The thing is, in the early stages of injury (and by early, I also mean the first couple of years after the incident — TBI is a gift that keeps on giving 😉 ) your brain is still trying to figure things out and it is organizing itself around a new way of needing to live your life. Generally folks with TBI don’t have a full and complete understanding of how they’ve been impacted and how it’s affecting their life – we just thing that the world has suddenly gotten all screwed up for no apparent reason. So, our brains are floundering and confused and not quite sure how to find their way out of the messes we’ve gotten into.

And the reorganization that normally takes place as a natural part of recovering from an injury — the reorganization of our brains along certain lines, so that we can resume some level of functionality — can be a bit haywire. The “plastic” brain is a lot like modeling clay. If you press it into a certain mold and leave it there, it will assume that shape and become like its environment. If you leave a lump of it lying on a table and walk away, when you come back a week later, it will be hardened into a chunk that may shatter if you drop it. If you stretch it into lots of thin, haphazard shapes and you leave it that way, it will harden into those thin and haphazard shapes.

So, when your brain is coming back from an injury and it’s looking for different ways to reshape itself, it can get all pulled in a gazillion different directions, because in the aftermath of TBI, things can be crazy and confusing, and we can come up with all sorts of skewed perceptions of ourselves. And if those perceptions are not questioned, challenged and corrected, they can harden into “truth” — which leads us even further down an erring path — into yet more trouble.

Hm. So, the crazier things get, the crazier you feel, and you wonder if you’re just plain losing your mind. You feel depressed and confused and out of sorts, and you don’t know why. So, you do the “logical” thing and you seek professional help. Your friends and family applaud you, because you’ve been getting harder and harder to deal with, and it seems like you have “emotional problems”. (Well, duh – emotional lability and impulse control are often “bundled” with TBI, as a neat little package of insult, injury, and humiliation for everyone involved.)

The only problem is, the therapist you start to see doesn’t know jack about TBI, and they come from the camp of “repressed memory” and how an unhappy childhood marked by long-forgotten/denied/overlooked abuse and neglect is to blame for adult issues. They believe with all their professional soul that most people are walking around in life cut off from their emotions, and that the true path to happiness is to connect with your inner hurt, name your pain, confront the things you are avoiding, and learn to love your demons.

There’s only one problem — none of what they say actually applies to you. The issues you have didn’t start until after your traumatic brain injury, and prior to that head injury, you were a reasonably happy and functional person with their share of troubles, but no “ticking time bomb” of forgotten abuse and neglect to throw you off course. They think that like certain childhood abuse survivors, you have been in denial most of your life, until you reached a certain point in your life when you had “advanced” enough to confront the challenges of resolving a difficult childhood… and they’re going to help you do just that — get in touch with your repressed memories, love the shadow, dance with your demons, and ultimately come to accept and love yourself, no matter what.

Great.

What they don’t realize, however, is that your brain is still recovering, still changing, still modifying itself to the world as it now is (rather than as it was before your injury). It’s volatile and highly subject to suggestion, and you’ve been wrestling for so long with not knowing for sure what’s going on with you or how best to deal with it, that your system is highly tweaked and on an emotional hair trigger. They think you’re in need of emotional “tough love” — but what you really need is some good regular exercise, a daily routine to take the guesswork out of your life, and extra patience and rest.

So, they push you. They challenge you. They test your limits. They try to get you to open up to them… pushing and pushing to get you to “admit” what’s going on inside of you, when internally, you’re in storm of emotion that’s neurologically based and totally inexplicable from a purely psychological point of view. They think you’re in denial and resisting necessary change, and you’re sitting there, week after week, looking at them like they’re from another planet, wondering “What’s wrong with me?!” and getting more and more confused and depressed by the week. You take it out on your friends and family, who have really had it with you, by now, and pull even farther away from you than before, thinking you’re just not trying hard enough.

Your therapist thinks you’re making great progress, getting in touch with your feelings and emotions, letting them come up and processing them. But you’re sinking farther and farther into a morass of emotional confusion, volatility, self-doubt, even desperation. Of course, this is all helping to create repeat business for the therapist who is “helping” you, and they can add even more diagnoses to the insurance bill, so what do they care? (Okay, in fairness, I’m sure that not all therapists are interested in creating repeat business, but any time you combine “care” with making a living, you get into gray areas and tricky territory.)

You’re increasingly worried about your emotional and mental health, and that’s keeping you stressed. You’re not sleeping well, which is taking a toll on your ability to self-regulate — your ability to do, well, everything. You’ve got all of the following TBI after-effects in abundance:

emotions, moods, agitated, can’t settle down, anger, anxiety, feeling vague fear, worry, anticipation of doom, depression, feeling down, excitability, everything feels like an effort, feeling unsure of yourself, feelings of dread, feeling like you’re observing yourself from afar, feelings of well-being, feeling guilty, feeling hostile towards others, impatience, irritability, no desire to talk or  move, feeling lonely, nervousness, feelings of panic, rapid mood swings, restlessness, tearfulness, crying spells, feeling tense, feeling vague longing/yearning, etc…

And according to your therapist, it’s all due to mental health issues. Not brain issues. Emotional ones. It’s not your body that’s the problem. It’s your soul. You’re screwed.

Your brain is getting a steady stream of messages from your therapist and from yourself about “the way things are” — which is that you’re screwed up and in need of some serious intervention — and it’s causing your very plastic brain to re-form itself along the lines they’re suggesting. You feel like you’re getting worse, so your therapist dials up the intensity … and tells you all the drama is good — you’re “feeling things for the first time” (which is total, utter crap) and you’re acknowledging the difficult-to-handle aspects of your life (which really only emerged after your TBI). It throws you into even more of a tailspin, and before you know it, you’re planning on breaking up with your partner/spouse/lover, you’re riding the roller-coaster of withdrawal on one hand and aggression on the other, and you’re more and more convinced that you can’t live without your therapist, who is the one person who will sit in a room with you for more than a few minutes, as you’ve effectively chased everyone else away.

Anybody else have this happen to them? It happened to me, and looking back, all the advice from my friends and family about getting professional help from a licensed psychotherapist, was about the worst I could have gotten — and followed. It almost cost me my marriage, it turned my life into an extended experience in chaos, and the only reason I managed to escape the bogus-psychotherapy merry go round, was that I ended up seeing a truly well-meaning but neurologically clueless psychotherapist who scared the crap out of me because they had connections at a local mental hospital who could have me committed (against my will) at their say-so. A narrow escape, but an escape no less.

In fairness, I do believe that a lot of therapists are well-meaning and they are acting on the information and the training they have. But too often that training does NOT include a neurological element, and/or they decide that the awful ills of the world have psychological roots.

Another thing that makes it difficult is that a lot of therapists have mental health issues of their own. A lot of my therapist friends got into therapy because they were helped by counselors, themselves. While I applaud their eagerness to help others, it puts up a huge red flag for me. Because the nature of their mental health issues — incest or eating disorders or some other awful trauma — caused them to distance themselves from their bodies at a fairly early age, and they have grown up living outside their bodies. My therapist friends are by and large antagonistic towards their own bodies. They don’t really exercise, and if they do, it’s “gentle stretching” or yoga or something really non-challenging. They are not on friendly terms with their own physical selves, which closes their minds when I suggest that exercise and taking care of your body (as if your life depends on it, which it does) is key to mental health.

It’s all “mind over matter” for them — and I’ve witnessed the same mindset in other psychologists and therapists I’ve met. Not physically vigorous. Not physically healthy. Sitting all day in small rooms, gaining weight, losing muscle tone, planning on knee and shoulder replacements to repair the damage that their sedentary lifestyles have done to their bodies. And complaining all the while about stupid little things that a little exercise would make seem inconsequential.

Good grief.

Anyway, I’ll quit ranting, now. It’s a beautiful day, and thank heaven I remembered I need to move money into my bank account to cover a monthly autobill. Just to wrap up, when it comes to deciding whether or not you really need therapy, consider your neuropsychological state, and make sure you don’t get stuck with someone who doesn’t have a clue about how neurology can make you a little crazy… but that passes with time, and with the proper training and reinforcement for what your life can really be like.

‘Cuz if you aren’t crazy when you start seeing them, regular visits can make sure you really get there.

Caveat emptor.

Cheat-Sheet for Noticing Head-Injured Moments

Source: alphadesigner

This Cheat-Sheet comes from Give Back Orlando

1. Things I wish I had not done, or things I wish I had done differently.

2. Things I wish I had not said, or things I wish I had said differently.

3. Things I said or did that got a bad reaction out of other people.

4. Things I said or did too quickly.

5. Things I said or did without being careful enough.

6. Things I forgot to do.

7. Things I wanted to do but did not get around to doing.

8. Things I was told and later forgot.

9. Repeating myself without realizing it.

10. Forgetting where I put something.

11. Getting too emotional.

12. Wasting time.

13. Spending too much time on something that was unimportant.

14. Spending too little time on something that was important.

15. Being unable to put something out of my mind when I need to.

16. Making the same mistake I made before.

17. Taking unwise risks.

18. Misunderstanding people.

19. Having trouble getting others to understand me.

20. When search for something, overlooking it.

Most, if not all of these, have applied all too well to me, lately. I know I’m tired after spending so much time getting ready for this new job, but c’mon… enough is enough.

Time to get back to basics, I guess.

Again.

84 ways TBI can make your life really interesting

Some time back, I compiled a list of possible issues TBI can introduce into your life. I combed through a bunch of sources and then put them all together, took out the duplicates, and came up with a list of common complaints related to traumatic brain injury. I’ve refined the list over the past couple of years, and I’m sure there are more issues I’ve missed, but this is what I’ve  been working with, thus far.  These apply to mild, moderate, and severe. And a lot of them are problems I have dealt with on a regular basis throughout the course of my life.

Here’s the list, broken down by category:

Behavioral
1. Impulsiveness
2. Aggression (verbal/physical)
3. Raging behavior

Communication
4. Trouble being understood
5. Trouble understanding
6. Trouble finding words
7. Trouble communicating in general

Emotions/Moods
8. Agitated, can’t settle down
9. Angerrrrrr!!!
10. Anxiety – Feeling vague fear, worry, anticipation of doom
11. Depression, feeling down
12. Excitability!
13. Everything feels like an effort
14. Feeling unsure of yourself
15. Feelings of dread
16. Feeling like you’re observing yourself from afar
17. Feelings of well-being
18. Feeling guilty
19. Feeling hostile towards others
20. Impatience
21. Irritability
22. No desire to talk or  move
23. Feeling lonely
24. Nervousness
25. Feelings of panic
26. Rapid mood swings
27. Restlessness
28. Tearfulness, crying spells
29. Feeling tense
30. Feeling vague longing/yearning

Day-to-Day Activities
31. Being overly busy (more than usual)
32. Feeling like you can’t get moving, you’re stuck
33. Feeling like you can’t get anything done

Mental
34. Altered consciousness
35. Aura or weird reverie, trance
36. Trouble concentrating
37. Trouble making decisions easily
38. Trouble reading
39. Analytical skills suffer
40. Trouble telling what’s real or not
41. Being easily distracted
42. Being forgetful, can’t remember
43. Nightmares
44. Worrisome thoughts

Physical – Eating
45. Food cravings
46. Eating less / more than usual
47. Heartburn / indigestion / upset stomach
48. Losing weight

Physical – Head
49. Headache(s)
50. Stabbing pain(s) in your head

Physical – Hearing
51. Hearing music others don’t
52. Ears ringing (tinnitus)

Physical – Pain
53. Backache or back pain
54. General body aches
55. Joint painf or stiffness
56. Neck pain
57. Touch feels like pain

Physical – Sleep
58. Waking up too early
59. Being fatigued / tired
60. Difficulty falling asleep
61. Waking up during the night
62. Sleeping too much

Physical – Vision
63. Trouble seeing at night
64. Being sensitive to light
65. Double/blurred vision
66. Spots, floaters,  or blind spots

Physical – Sensations
67. Your skin feels like it’s crawling
68. Feeling like you’ve gained weight
69. Sensitivity to cold
70. Sensitivity to noise, sounds
71. Smelling odors / fragrances that others don’t smell

Physical – General
72. Feeling dizzy / have vertigo
73. Your heart races or pounds
74. Hot flashes or sudden feelings of warmth
75. Losing consciousness / fainting
76. Metallic taste in your mouth
77. Muscles spasms or twitching
78. Muscle weakness
79. Seizures
80. Nausea
81. Sexual desire feeling “off”
82. Skin breaking out / acne
83. Hands or feet swelling
84. Vomiting

Now, some of them might look like they are duplicates — #3. Raging behavior should be grouped with #9. Angerrrrrr!!!, right? I’ve actually split them up because one is behavioral, and one is emotional/mood related. Just because you’re angry, doesn’t mean you’re going to have raging behavior, but anger can still be a significant problem.

One thing that struck me, as I was compiling this list over the past few years, is how many of the symptoms are physical. It almost doesn’t make sense. You injure your head, you hurt your brain, and your body starts acting up? Where’s the sense in that? Well, considering that the brain is like the command center of your body, I guess it does make sense.

The other thing that has jumped out at me, as I’ve considered this list over the years, is how the non-physical issues can often arise from the physical. Being dizzy all the time can really mess with your head, and it can make you cranky and mean and short-tempered. Likewise, having constant ringing in your ears can shorten your fuse and make you much more temperamental. And chronic pain has a way of depressing the heck out of you.

Now, not everyone with a TBI will have these issues, but lots of people will have one or more of these problems, and lots of them can come and go over time. It’s just one more handful of pieces to the puzzle that is TBI. A big handful, actually.

Lost weekend

Note to self – before reacting (or over-reacting) to information, make sure you have all the facts. And if possible, check with a reliable source, before you start jumping to conclusions.

I almost walked away from a very important relationship over the weekend, because I had bad information, and I didn’t think it all through well enough.

I panicked. And I jumped the gun. And I overreacted to the point where I was planning on restructuring my entire life.

For no good reason. I was wrong about some key points, and I regret having lost what could have been an amazingly creative and productive weekend.

Note to self – get out of your head. Value your hours — and your relationships — enough to get all the facts before trashing your life.

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.

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.