Sleep mask + earplugs = magic

I actually slept for seven hours last night.

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

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

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

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

I noticed it especially last night

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

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

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

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

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

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

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

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

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

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

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

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

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

Sleep matters

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

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

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

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

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

If I were a psychotherapist…

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

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

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

And I look forward to getting more of it.

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.


I wish my therapist knew… I need more help than regular folks

First, let me say, I really like my therapist. They are insightful, patient, kind, and they  let me just say what I need to say, without getting alarmed.

But they don’t know about brain injury, and there are some things I wish they understood.

Like the fact that my brain doesn’t work like other people’s brains, and the assumptions they make about the source of my problems may not be accurate.

Specifically, I was talking last week about a relationship that’s very close to me, and they started talking about me being “codependent” with this person. Okay, first off, I’m brain-injured. That means I need to depend on others for things that regularly functioning people don’t have to. I do not necessarily have the capacity to be fully independent in all things. I’ve tried it in the past, and it didn’t work.  Even when I thought I was being independent, I was doing a piss-poor job of it.

Take, for example, the six months or so that I lived all alone, back in 1990. I’d broken up from a long-term relationship that wasn’t working, in February 1990, and then I got into another relationship with someone who was a pretty good caretaker, then got into drug and alcohol abuse, and I had to leave them, too. From about June until November, 1990 (when I met the person I’ve lived with pretty much ever since) I was on my own, taking care of myself and my apartment, going about my regular business. I was making art, drawing, sculpting, making pottery, writing, living my life… you name it. Things were pretty good, and I was doing a passable job of taking care of myself.

On the surface I was, anyway.

What most people couldn’t see, was that i wasn’t taking care of myself properly. I didn’t keep my place very neat, I didn’t eat right — I ate mostly rice and beans and steamed carrots and peas. I rarely ate a balanced meal. I didn’t go out much at all, but stayed inside and wrote and drew and listened to the radio. I had a very limited range of motion, and I wasn’t able to cultivate many friendships. I was employed for a while, then I had to leave my job and start temping because of physical issues that arose from me not taking care of myself. I was smoking a pack of cigarettes a day, and I was living in a constant fog and daze, unaware of what was going on around me, going through the motions without realizing that was what I was doing.

When I think back, I’m amazed I did as well as I did.

Then I met the person I’ve been with since then, and things started to turn around — here was someone that was able to interact with the rest of the world, whom I could “cue” off… I could follow their lead and watch what they did, and imitate their manners and get by. This person was so lively and social and so popular and in-demand with everyone them. They knew how to make people feel safe and valued and secure and happy… they were exactly the kind of person I wanted to be like. And when I followed their lead and behaved like they behaved, then I could experience life like they did, which was a much brighter and more vibrant way of living than my own. And I could buy myself time to figure out what was going on around me, by following their example and satisfying basic social requirements that others expected me to fulfill.

Writing this for others to read, it might sound like I’m just a shell of a person who just runs around and imitates others to get by. And in a way, it’s true. Left to my own devices, my range of motion in the world is so dramatically limited — I don’t feel comfortable out in public, because it’s so overwhelming for my senses. Given a choice between doing something productive and sitting motionless for hours, my brain will choose the latter. Given the choice between interacting with others and writing 100 pages of repetitive “insights” about an hour of my day, I’ll go with the writing. Given the choice (at the end of the day) between eating a full meal that takes an hour to prepare, and snacking on crackers and goat cheese, I’ll choose the snack.

It’s not that I don’t value myself. It’s not that I’m sucked into a relationship that’s compromised by codependence. It’s that I’m in a relationship that makes room for my dependence.

Calling me “codependent” makes me feel deficient. It makes me feel ashamed. I need more help than other people to do the kinds of things most people just take for granted. Given the choice between the normal thing that takes a lot of effort for me, and the irregular thing that my brain can handle without undue stress and strain, I’ll opt for the latter — and I’ll never realize there is anything wrong with it. That doesn’t make me bad, it doesn’t make me flawed. It doesn’t make me a basket case. It means I’m dealing with the limitations of a brain injury — a hidden disability that others have no idea is there, and they have no idea about the extent to which it affects me. Even I don’t fully realize it, most of the time. And people who jump to conclusions about me being psychologically compromised because of behavior that is brain-injury related really need to study up on anosognosia, before they start judging me and my life choices.

I’m realizing more and more each day, that I’m having a lot of trouble with the terminology that’s being used with me by my therapist — codependent… denial… shame… trauma… It feels to me like things that go hand-in-hand with brain injuries, are being interpreted as psychological/emotional issues…. and they get interpreted as things that I can change at will. As things that a little self-awareness and psychotherapy will solve. My question is, if an issue has neurological roots, how can a brain that’s been impacted be expected to fully grasp and deal with what’s going on with it?

It could be that I am never fully independent. I never have been, as much as I’ve wanted to be, and I may never turn out that way. But I don’t see why I need to be judged for it, or urged to be something I’m really not.

Working my way through all this…

It’s been a few months, since I first put 2 and 2 together and realized that there was actually an “umbrella” that I could collect all my internal issues under — Mild Traumatic Brain Injury, or MTBI.

I’ve been talking to folks in support groups and medical professionals, and it just amazes me how little information is readily available, unless you’re “locked on target” and deliberately seeking it out. I am locked on target and I’m on a mission to figure all this out, and it’s my hope that my writing on this blog will help others who are pretty much clueless about what TBI is and how it can affect your life and that of others.

I came across a great book, which I’m gradually working my way through, called Brain, Heal Thyself by a caretaker for a stroke survivor, who helped her friend return to functional health — despite what the medical establishment said was possible. I’m still reading, but on page xvi of the Introduction, one of the great things she says is how medical professionals like to say “Every stroke is different,” as a way to get out of answering our “weird” questions. Amen to that! I am so sick and tired of that lame cop-out, where people who go to school for many years, studying the dead and the dying (they start out with cadavers, after all, and often see only people who are so far gone they can no longer avoid visiting a doctor), can’t bring themselves to study the living… or give us the credence to take in the information we pass along to them, because it can’t be standardized, categorized and controlled the way they’d like.

I am just so sick of it. The conflicting information, the arrogance of a medical establishment that will say, one month — with all confidence — that eggs are undoubtedy very bad for you and will probably kill you if you eat too many of them… And then turn around the next month (apparently, when the Egg Growers Lobby raises a hue and cry and funds a conflicting study) and tells us — with absolutely certainty — that eggs are actually not bad for you, and you’ll probably suffer health defects and slide slowly downhill in a state of painful, irreversible physical decline, if you don’t eat three eggs a week.

These same people are running around doing studies and using advanced equipment for research, and either keeping their findings to themselves — locked away behind the wall of medical terminology — or discouraging “lay” people from finding out about it for themselves. I can’t tell you how many weird looks I get from doctors and clinicians, when I talk about research I’ve read or things I’ve observed in my own life.

And, as was the case yesterday, sometimes I’m contradicted on my findings by doctors who freely admit that they are not experts in TBI — and actually say they know next to nothing about it — but they’re sure I must be wrong about my symptoms. Probably because I’m not a doctor.

But I live in this body. I am living this life. And if anyone should know what’s going on inside my little head, it would be me… provided, of course, I can apply unsparingly rigorous “reality checks” to what I think I’m seeing/hearing/thinking/experiencing.

That’s the pecadillo about impaired self-awareness. The one person who should/could be the expert on their brain, might not be. It’s maddening. But there are ways around this — when you know you’ve got limitations, you can plan for them, work around them, accommodate them, and adjust your standard deviation metrics.

So, I’m just working my way through all this. Trying not to get locked into one “set” way of thinking about how my brain functions, sticking with the facts of the matter:

  • I was struck in the head by a rock around age 8, was knocked out briefly/dazed and groggy afterwards, and I noticed significant changes in my behavior, moods, and cognitive abilities thereafter.
  • I fell down a flight of stairs in 2004, hit the back of my head several times, was intensely dazed/nearly knocked out for a few second, and thereafter found myself missing key information (like not recognizing people I worked with), unable to get a full night’s sleep, having intensified temper flares, and a whole raft of cognitive problems (like suddenly being unable to multitask and switch gears like I used to very fluidly), which I attributed to job stress, but which continued after I left the job (which imploded around me, when I couldn’t keep up with the pace).

I can’t keep second-guessing myself on my TBI(s), and I can’t give in to people who assume that because I do a really good impression of a normal person, it means there’s nothing wrong with me. There’s a whole lot wrong with me. Inside this head. That I can’t articulate very well with other people, when speaking. And I’ll have to work through this, one issue at a time.

If there’s anything I have, it’s time.

Ruminations of a high-fuctioning mtbi survivor

Okay, so this post is purely self-serving, in that I need to remind myself that I am indeed a high-functioning mild traumatic brain injury survivor, who has managed to build a pretty incredible life for myself and my family, despite my injuries at age 7-8 and three years ago at age 39.

I’m in the job market again, and I’m looking at my job prospecting with a whole new eye — keeping tabs on my stressors and trying to navigate the world of recruiters and headhunters, who are all so incredibly DRIVEN and don’t give themselves, let alone me, a chance to breathe. Take a deep breath, folks. Honestly…

I’ve been talking to headhunters, on and off, for a few days, and they’re starting to make me crazy. All that go-go-go stuff and the constant pressure to schedule something with them… to make it happen… make it happen! Can-do shit and all that. I have to admit, I’m a bit tired of all that pushy crap, and it’s making me antsy and short-tempered. I actually snapped at a headhunter today who was just pushing too hard. People can’t push me hard, anymore. Not anymore. No thanks. Give it a break.

Still, one must work, one must earn money, one must pay the bills… If only I could find a job I could do from home, instead of going out into the world. I’ve been thinking I really need to work for a company that can offer me structure and reliability and some sort of regular schedule. I’ve been in and out of the regular job scene for a while, back and forth to a part-time job and futzing around for the past year or so. I’ve been thinking that I need more than that — more structure, more involvement…

But the more I talk to people in the working world, especially recruiters for technology companies, the more it gives me the willies. And I don’t relish the idea of going back to a 9-to-5 position. Especially if it involves driving an hour each way. Just too much.

Especially since I’m starting into dealing with this TBI stuff. I really don’t want to have to put my diagnostic testing and rehab on the back burner, while I try to figure things out. I don’t have an unlimited amount of money in the bank, so something must be done. But really, I’d prefer to work at home… telecommute. Work remotely. Not have to go into an office.

Better yet, I’d prefer not to have to work at all.

But that’s not really in the cards, at this point. Unless people buy so many of my headache journals that I can retire. Or they purchase more of my writing/research/resource guides. That’s always a possibility. A slim and distant one, but a possibility, no less.

But seriously, folks, there must be a better way for tbi survivors to make a living, than having to schlep into an office and be surrounded by people who neither understand nor care about your condition. I’ve worked with disabled people before, and while our employer did accommodate them, and they were great friends with everyone they worked with, the simple fact is, they had to work like the dickens just to get by “normally.” And while people did help and reach out to them, there was always that undercurrent of pity that makes my skin crawl.

I just can’t bring myself to “play the disabled card” as a tbi survivor. I’m still up in the air about whether I’d even mention it to an employer. I certainly will not mention it to consulting clients. That would totally work against me, I believe.

I just need to keep it to myself, unless there’s an expressed need to let people know what’s going on. I guess it’s all in a day’s work for a tbi survivor… trying to figure out how to navigate the working world. Or the world in general.

But I don’t think I started this post to bitch and moan about my job situation… where was I? Oh, yes, now I remember: ruminations of a high-functioning mtbi survivor. That means I’m supposed to focus on my strengths, I suppose 😉

The oddly conflicting fact of the matter is, being a high-functioning tbi person can make things all the more difficult, because if you don’t “present” like a tbi person (like me), it can be pretty difficult to get people to take your limitations seriously. I’m having a getting-to-know-you meeting with a counselor who’s seeing a friend of mine, who’s really struggling with my newly discovered tbi status. This counselor knows a bit about tbi, and they don’t think I look or act like a tbi survivor, whatever that may be like. So, I need to sit down and explain things and hopefully elucidate my situation.

I’ve invested a whole lot of time and energy in making sure that nobody, but nobody, realizes I’ve got a disability, and now I have to sit down and explain to someone how my front is often just a front, which makes me a fraud and a fake, I suppose, on a certain level. I’m not nearly as smart as I pretend to be. Or as quick. Or as inspired. I just do a great job of imitating someone who is. Or maybe that makes me a highly resourceful survivor extraordinaire, who just doesn’t want to miss out on life and sucks at self-assessment, so they can’t see that they’re not quite as smart/quick/inspired as they think they are.

It’s all very confusing, and I’m not helping myself any, right now. I’m actually very tired. And stressed. And worried about these interviews I have coming up over the next few days.

Just remember, on the internet, nobody knows you’re a dog…

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When they think your TBI is PTSD

I just checked my blog stats, and somebody came over to this site while Googling for info on soldiers and PTSD.

I want to quickly put in a word for military folks who are seeking help for post-combat/deployment issues, who may be headed down the PTSD treatment road, but may miss TBI treatment in the process.

I started professional counseling about six months ago for “coping issues” that I couldn’t get my head around. Everything in life had just gotten so difficult, and I couldn’t understand why I kept running into dead ends with jobs and relationships and why I couldn’t seem to advance in life. All my peers have “moved on” and “grown up” — many of them now with grandkids and advanced careers, long-term homeownership, and all the accoutrements of adult life… while I languished in a no-man’s-land of false starts, scattered ideas, and a long line of failed or aborted attempts at living a normal life.

Now, don’t get me wrong — on the surface, my life looks like it’s highly advanced. I’ve got a great home, a wonderful marriage, and two cars in the garage. My resume looks fabulous, and I’ve got a lot of respect from folks. But my external circumstances don’t match my internal state… and they haven’t for a long time. Nobody really knows just how deep the self-doubt, anxiety, self-criticism, abysmally low self-esteem, and constant invisible struggle really goes.

Except me. And I don’t breathe a word of it to anyone. Not if I can help it.

So, when my health and career and personal life all started to tank in a very big way, this past year, I sought professional help. The counselor I found is highly experienced, compassionate, insightful, kind, caring, and very adept at what they do. But I found myself over time feeling as though they were looking for some sort of horrific trauma in my past that would cause me to lose big chunks of my memory, be uncertain around people, and erode my emotional and behavioral (and cognitive) foundation.

I got the distinct impression they were looking for emotional trauma. Abuse. Neglect. Some sort of terrible thing(s) others did/do to me that cause me to have PTSD. Or some life-threatening event that brought on PTSD.

We had talked about post-traumatic stress a good deal, and both of us accepted that it could have a part in my difficulties. But no matter how closely I looked at my life, I couldn’t for the life of me find THE Event(s) that had wrecked me for “normal” life.

It just didn’t make any sense to me. And when I dug deep and did my own research and realized that sustaining a traumatic brain injury at the age of 8 (and possibly other times), as well as another TBI three years ago, did actually fill in a huge, gaping missing piece of the puzzle.

It’s not that my counselor was incapable or incompetent. They were just looking for the wrong thing in the wrong place. They’re a wonderful resource for me, and I really value their input, but in the case of TBI, I had to come up with my own diagnosis.

This article was very helpful:

Concerns grow about war veterans’ misdiagnoses – Brain injuries can defy easy detection” – I passed it along to my counselor, and they found it very helpful… as well as a bit disconcerting.

And the blog “A Soldier’s Mind” has some more info.

If you’re in the same boat I am/was, you may need to do your own research & preliminary diagnosis, too. After all, TBI tends to make it very difficult for people to tell what’s going on inside our heads — and it can make it tough for us to figure that out, too. Doing research online is a great way to make a start.

I’m finding that TBI is not particularly well-known in the psychotherapeutic community — I have a bunch of friends and associates who are therapists, and when I’ve talked about TBI, I’ve gotten blank stares. That’s not entirely their fault. They aren’t always trained to look for physical ailments, which are the domain of medical doctors. If anything, they’re taught to look away, in terms of medical issues — liability issues, I suppose. Unfortunately, there seem to be a lot of highly trained individuals who simply don’t have the kind of physiological orientation that treats cognitive-behavioral symptoms as possible neuro-physiological phenomena. They are accustomed to looking at emotionally traumatic life experiences as the root of PTSD problems. They’re looking for the right thing… but they’re looking in the wrong place.

I really want to devote a fair amount of time and energy on this site to explaining to psychotherapeutic professionals the personal realities of living with TBI, as it relates to trauma. There are different aspects of the condition that both mask post-traumatic stress and exacerbate it. TBI adds another wrinkle to the whole scene that complicates matters and requires greater sensitivity to our situation.

When I informed my counselor about my TBI, they seemed a bit concerned that I wouldn’t need their help anymore… or that I’d terminate my sessions with them. They seemed to think that TBI work would replace the cognitive-behavioral work I was doing with them. But in fact, the TBI aspect makes it even more important to do cognitive-behavioral counseling. It doesn’t make counselors superfluous. If anything, it makes them all the more essential.

Other posts about PTSD:

Better today… of pain and ptsd

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