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.Β  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.Β  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.

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 πŸ˜‰ ) 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 orΒ  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.