Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

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Okay, FINE, I’ll self-assess!

Well, the long weekend is almost over, and I’ve been spending the past few hours logging my experiences from last week, so I can share them with my neuropsych this coming week.

I keep daily logs of the things I plan to do, and I also track my successes/failures when all is said and done. Being the busy (compulsive?) individual that I am, I usually have a full page, each day. I use color highlighters to mark the things I get right and the things I don’t. Green means success, pink (which I hate) means failure because of my cognitive-behavioral/physical issues, and orange means something got in the way or I didn’t complete things for a benign reason (like I ran out of time).

I also have a log in my computer (aren’t spreadsheets wonderful?) where I list the things I’ve planned to do, and how they turned out, and what the reasons for my successes/failures were. I have been typing in my last few days’ worth of experiences, and as usual it’s a real eye-opener.

I tend to get very caught up in the moment… lose track of things I was working on a few hours or a few days before hand. I am very present-oriented, as well as future-oriented. I guess enough unpleasant, confusing mess-ups have happened in my recent and distant past, that I just got in the habit of not paying any more mind to experiences, once they’re over.

That’s fine, if I don’t care to ever learn from my past… but these days, I’m feeling more and more like I really need to pay attention to my lessons, get what I can out of them, and make a lot of effort to incorporate them into my life.

So, I’ve been logging my experiences into my computer log, so I can take them with me and discuss them with my neuropsych this coming week. It’s funny — they have been so supportive and encouraging and impressed wtih my progress… I’ve kind of gotten the impression that they don’t fully appreciate the range of my difficulties and how they get in my way.

Good heavens, but I keep busy! Good grief, should I say… My hands are tired from doing three pages’ worth, and my head is spinning with what I’m seeing. Basically, the pattern that’s emerging is me jumping around from thing to thing, not completing some important tasks, and running off to do side projects for no other reason than that I can.

On the other hand, I have made some really substantial progres, here and there. But I haven’t taken the time to really sit with it and appreciate it. Things like me getting my 2010 priorities in order… cleaning my study at last… doing my daily exercise… and taking really good care of my house… These are very important things I’ve accomplished in the past week, and I need to pay attention to them. I need to give myself some props.

I also need to give myself a good swift kick in the rear, because there are a lot of things I’ve let slide. It’s not enough for me to make a list in the morning, check some things off, and then not pay any more attention to it, after 2 p.m., which is my pattern. I really need to stay on top of myself, or I’m going to get hopelessly swamped in partially-finished projects. And I’m also running the real risk of taking on too much — yet again — which can spell disaster when it all comes to a head, and the non-essential things are crowding out the essential ones.

I must admit, I hate to self-assess. It’s difficult and painful and awkward and it reminds me of all the problems I have.

But it’s a new year, and I really have no choice but to change my dissipating ways. I need to rein myself in and buckle down to get done what I need to get done — what I’ve promised my boss I’d get done.

I expect to feel like crap for another day or so. I always feel terrible about myself and my life, when I start self-assessing. It’s so uncomfortable for me to see all the things that are amiss in my life… all the things that need fixing. But what’s the alternative? Leave them alone, and leave myself to rot? Don’t think so.

I can do better than that.

And so I shall.

One concussion, two concussions, three concussions, four…

I had a meeting with my neuropsych last week, when we talked about my concussive history. I had read the article by Malcom Gladwell in the New Yorker called Offensive Play, and I had some questions about how my past might have made me more susceptible to tbi, later in life.

I was wondering aloud if my rough-and-tumble childhood (when falling and hitting my head and getting up and getting back in the game ASAP were regular parts of play), might have brought me lots of subconcussive events, like so many impacts on the football field. I checked in with my neuropsych, and they had me recap from the top, all the head injuries I could recall. My recollection and understanding of them was considerably better than it was, just six months ago. What came out of it was the determination that I’d had enough genuine concussions to do a fair amount of damage to myself. Forget about subconcussive events; the concussive events sufficed to cause plenty of problems, on their own.

It kind of threw me off for a day or two, and I got pretty stressed out and ended up pushing myself too hard, and then melted down in the evening. Not good. It’s hard, to hear that you’re brain damaged. It’s not much fun, realizing — yet again — that you haven’t had “just” one concussion, but a slew of them. And considering that I’m in this new job where I have to perform at my best, it really got under my skin. It’s taken me a few days to catch up on my sleep and settle myself down, after the fact. But I’m getting there. My past hasn’t changed, nor has my history. I’m just reminded of it all over again…

All told, I’ve sustained about eight concussions (or concussive events) that I can remember. Possible signs of concussion (per the Mayo Clinic website) are:

  • Confusion
  • Amnesia
  • Headache
  • Dizziness
  • Ringing in the ears
  • Nausea or vomiting
  • Slurred speech
  • Fatigue

Some symptoms of concussions are not apparent until hours or days later. They include:

  • Memory or concentration problems
  • Sensitivity to light and noise
  • Sleep disturbances
  • Irritability
  • Depression

I experienced most of these (except for nausea and vomiting, and not so much slurred speech, that I can remember) during my childhood and teen years. Not surprising, considering that I had a number of falls and accidents and sports injuries over the course of my childhood.

It’s pretty wild, really, how those experiences of my childhood contributed to my difficulties in adulthood — especially around TBI. I’ve been in accidents with other people who had the same experience I did, but didn’t have nearly the after-effects that I suffered. For them, the incident was a minor annoyance. For me, it was a life-changing concussion. A head injury. TBI. Brain damage. Geeze…

Thinking back on the course of my life, beyond my experiences with the accidents that didn’t phaze others but totally knocked me for a loop, I can see how the after-effects like fatigue and sensitivity to light and noise, really contributed to my difficulties in life. It’s hard to be social and develop socially, when you can’t stand being around noisy peers (and who is as noisy as a gaggle of teens?). It’s hard to learn to forge friendships with girls — who always seemed so LOUD to me(!) — or hang with the guys — who were always making loud noises, like blowing things up and breaking stuff — when you can’t tolerate loudness.

And when you don’t have the stamina to stay out all night… It’s a wonder I did as well as I did, as a kid. Of course, I was always up for trying to keep up – I was always game. And I wanted so very, very badly to participate, to not get left behind, to be part of something… That kept me going. I was just lucky to have people around me who were kind-hearted and intelligent and tolerant of my faults and limitations.

Anyway, I did survive, and I did make it through the concussions of my childhood. I have even made it through the concussions of my adulthood.  And I’m still standing. I didn’t get any medical treatment for any of these events, and the most help I ever got was being pulled from the games where I was obviously worse off after my fall or the hard tackle, than I’d been before.

But one thing still bugs me, and it’s been on my mind. During my high school sports “career, ” I was a varsity letter-winning athlete who started winning awards my freshman year. I was a kick-ass runner, and I won lots of trophies. I also threw javelin in track, and by senior year, I was good enough to place first and win a blue ribbon in the Junior Olympics. Which is great! I still have the blue ribbon to prove it, complete with my distance and the date. But I have no recollection of actually being awarded the ribbon, and I barely remember the throw. I’m not even sure I can remember the event or the throw. It’s just not there. It’s gone. And it’s not coming back. Because it was probably never firmly etched in my memory to ever be retreivable.

I’ve never thought of myself as an amnesiac, but when it comes to my illustrious high school sports career, when I was a team captain and I led my teams to win after win, I have all these ribbons and medals and trophies, but almost no memory of having earned them.

Which really bums me out. What a loss that is. When I hear Bruce Springsteen’s song “Glory Days” I feel a tinge of jealousy that the guy he’s singing about can actually recall his glory days. I can’t. And that’s a loss I deeply feel, mourn… and resent. Seriously. It sucks.

This could seriously mess with my head. And sometimes it does. But on the “up” side, it might also possibly explain why I’ve been such a solid performer over the years, in so many areas, yet I can’t seem to get it into my head that I am a solid performer. My memory of having done the things I did, in the way I did them, is piecemeal at best, and utterly lacking at worst. So, even if I did do  well, how would I know it, months and years on down the line? How would I manage to form a concept of myself as successful and good and productive and inventive and trustworthy, if I have little or no recollection of having been that way in the past?

It’s a conundrum.

But I think I have an answer — keeping a journal. Keeping a record of my days, as they happen, and really getting into reliving my experiences, while they are still fresh in my mind. If I can sit down with myself at the end of a day or a week, and recap not only the events of the past hours and days, but also re-experience the successes and challenges I encountered, then I might be able to forge memories that will stay with me over time. If nothing else, at least I’ll be making a record for myself that I can look back to later. And I need to use colors to call out the good and the not-so-good, so I can easily refer back to the date and see where I had successes and failures along the way.

Most important, is my recording of successes. I’m so quick to second-guess myself and assume that I don’t know what the hell I’m doing. And when I think back to the times when I overcame significant difficulties, I often lose track of the memory before I get to the end of the sequence I followed to succeed.

But I cannot let that situation persist. I need a strategy and a practice to reclaim my life from the after-effects of way too many concussions. I’m sure there are others in life who have had it far worse than me, but some of my  most valuable and possibly most treasured experiences are lost to me for all time, because I have no recollection of them.

No wonder my parents often start a conversation with me with the sentence, “Do you remember ________?”

Building my cognitive-behavioral exoskeleton

MTBI can do a lot of damage, in terms of shredding your existing skills and long-accustomed habits. It can really undermine your thinking and judgment, so that you never even realize you need to do things differently than you did before. And it requires that you force your brain (and sometimes body) to push harder and harder, even when every indication around (and inside) you is saying, “Let up… let up…”

This can be very confounding. I encounter — all the time — people who are keen on “taking it easy” and doing things “with ease and grace”. They think this is a sign of superior evolution. They think this is a sign of superior character, as though it means they are more “plugged in with the Universe”. They don’t want to have to expend the effort to get things done. They want Spirit/YHWH/God/Creator to do it for them. They don’t want to take a chance and extend themselves, because they are convinced that a Higher Power is more capable than they, and they believe they should just “get out of the way” and let that Higher Power take charge of their lives.

That may be fine for them, but that mindset drives me nuts. First of all, it absolves them of any responsibility for their actions. If things mess up, they can say it was “God’s will” or part of a “higher plan”. If things get really messed up, they can say they just need to be more “in tune with Spirit”.  I have a bunch of friends who are convinced that they are “channels” for Divine Inspiration, and that’s how they should live… just floating along on a tide of holy impulse. And their lives are a shambles. Objectively speaking, they are constantly marinating in a brine of their individual dramas and traumas. It’s just one thing after another, and all the while, they keep expecting Spirit/YHWH/God/Creator to fix all the messes they’ve helped create.

It’s very frustrating to watch this willful disregard of basic cause and effect, but I suppose everybody’s got their stuff.

Now, it’s one thing, if these people (some of whom are very dear to me) are content to live their lives that way, but when they expect me to do the same — and they judge me as being less “evolved” if I do things differently — it’s a little too much to take, sometimes. I don’t do well with living my life from a distance. I don’t do well with telling myself that I’m just floating along on the divine breeze, waiting for some wonderful opportunity to arise to save me from my own creations. I need to be involved in my own life. I need to be invested. I need to put some effort into my life. I need the exertion. It’s good for my spirit. It’s good for my morale. And it bolsters my self-esteem, as well.

Anyway, even if I wanted to just float along, I couldn’t. I’d sink like a rock. I’m not being hard on myself — this is my observation from years of experience. I can’t just ramble about, taking things as they come. I need structure and discipline to keep on track, to keep out of trouble, to keep my head on straight. I can’t just be open to inspiration and follow whatever impulse comes to mind. My mind is full of countless impulses, every hour of every day, and if I followed each and every one, I’d be so far out in left field, I’d never find my way back. I have had sufficient damage done to the fragile connections in my cerebral matter, that the routes that neural information takes have been permanently re-routed into the darkest woods and jungles of my brain. All those injuries over the years didn’t just wash out a few bridges — they blew them up. And they slashed and burned the jungle all around, and dug huge trenches across the neural byways I “should” be able to access.

As my diagnostic neuropsych says, “I am not neurologically intact.”

So that kind of disqualifies me for just winging it in my life. I tried for years to “go with the flow”, and I ended up flit-flitting about like a dried oak leaf on the wild October wind. I got nowhere. I can’t live like that, and I know it for sure, now that I’m intentionally trying to get myself in some kind of order. My brain is different. It has been formed differently than others. It has been formed differently than it was supposed to.

I can’t change that. But I can change how I do things. I can change how I think about things. I can change by facing up to basic facts. As in:

  • My thinking process is not a fluid one, anymore. In fact, I’m not sure it ever was — for real, that is. I’ve consistently found that when I’ve been the most certain about things, was the time when I needed most to double-check.
  • If I don’t extend myself to get where I’m going, I can end up sidelining myself with one minor failure after another. One by one, the screw-ups add up, and I end up just giving up, out of exhaustion and/or ex-/implosion… and I can end up even farther behind than when I started.
  • It’s like nothing internal is working the way it’s supposed to, and the standard-issue ways of thinking and doing just don’t seem to hold up.
  • My brain is different from other folks. It just is. It doesn’t have to be a BAD thing. It just is.

On bad days, it’s pretty easy for me to get down on myself. I feel broken and damaged and useless, some days — usually when I’m overtired and haven’t been taking care of myself. But on good days, I can see past all that wretchedness and just get on with it.

Part of my getting on with it is thinking about how we MTBI survivors can compensate for our difficulties… how we create and use tools to get ourselves back on track — and stay there. There are lots of people who have this kind of injury, and some of them/us figure out what tools work best for us, and we make a point of using them. These exterior tools act as supports (or substitutes) for our weakened internal systems. We use planners and notebooks and stickie notes. We use self-assessment forms and how-to books and motivational materials. We use prayer and reflection ane meditation and journaling. We use exercise and brain games. We use crossword puzzles and little daily challenges we come up with by ourselves.

Some of us — and I’m one such person — use our lives as our rehab. Not all of us can afford rehab (in terms of time or money), and not all of us can even get access to it (seeing as our injuries tend to be subtle and the folks who actually know what to do about them are few and far between). But we have one thing we can use to learn and live and learn some more — life. The school of hard knocks.

I use everything I encounter to further my recovery. I have to. I don’t want to be homeless. I don’t want to be stuck in underemployment. I don’t want to fade away to nothing. And that’s what could easily happen, if I let up. My friends who are into “ease and grace” don’t get this. But then, they’re embroiled in their own dramas, so they don’t really see what’s going on with me. Even my therapist encourages me to “take it easy” a lot more than I’m comfortable doing. (They’ve only known me for about seven months, so they don’t have a full appreciation of all the crap I have to deal with, so I’ll cut them a break.)

It stands to reason that others can’t tell what difficulties I have. After all, I’ve made it my personal mission to not let my injuries A) show to others, B) impact my ability to function in the present, and C) hold me back from my dreams. I may be unrealistic, and I may be just dreaming, but I’m going to hold to that, no matter what. I can’t let this stop me. None of it – the series of falls, the car accidents, the sports concussions, the attack… None of it is going to stop me, if I have anything to say about it. I just have to keep at it, till I find a way to work through/past/around my issues.

And to do that, I use tools. I keep notes. I write in my journal. I blog. I have even been able to read with comprehension for extended periods, lately, which was beyond my reach for a number of years. I keep lists of things I need to do. I come up with ways of jogging my memory. I play games that improve my thinking. I focus on doing good work, and doing well at the good work I’m involved in. I bring a tremendous amount of mindfulness to the things I care about, and I’m constantly looking for ways to improve. To someone with less restlessness and less nervous energy, it would be an exhausting prospect to life this way. But I have a seemingly endless stream of energy that emanates from a simmering sense of panic, and a constantly restless mind, so  I have to do something with it.

Some might recommend medication to take the edge off. But that, dear reader, would probably land me in hot water. Without my edge, I fade away to a blob of ineffectual whatever-ness.

I build myself tools. I use spreadsheets to track my progress. I downloaded the (free and incredibly helpful) Getting Things Done Wiki and installed it on my laptop to track my projects and make sure I don’t forget what I’m supposed to be working on. I have even built myself a little daily activity tracking tool that I use to see if any of my issues are getting in my way. It not only lets me track my issues, but it also helps me learn the database technologies I need to know for my professional work.

I am constantly thinking about where I’m at, what I’m doing, why I’m doing it. I am rarely at rest, and when I am, it is for the express purpose of regaining my strength so I can go back at my issues with all my might and deal directly with them. I am at times not the most organized with my self-rehab, but I’m making progress. And I track what I’m doing, to make sure I’m not getting too far afield. And I check in with my neuropsychs on a weekly basis.

I also use external props to keep me in line. I build exercise and nutrition into my daily routine, so I have no choice but do do them — if I break my routine, I’m lost. The anxiety level is just too high. I commit myself to meetings that require me to be in a certain place at a certain time, so I have to keep on schedule. I work a 9-5 job that forces me to be on-time and deliver what I promise. I surround myself with people who have very high standards, and I hold myself to them. As I go about my daily activities, I do it with the orientation of recovery. Rehabilitation. Life is full of rehab opportunities, if you take the time — and make the point — to notice.

In many ways, my external tool-making and structure-seeking is like being a hermit crab finding and using shells cast off by other creatures for their survival. I don’t have the kind of inner resources I’d like to keep myself on track, and I don’t have the innate ability/desire to adhere to the kinds of standards I know are essential for regular adult functioning. I’ve been trying, since I was a little kid, to be the kind of person I want to be, and it’s rarely turned out well when I was running on my own steam.

So, I put myself in external situations and engage in the kinds of activities that require me to stay on track and adhere to the kinds of standards I aspire to. I seek out the company of people who are where I want to be — or are on the same track that I want to be on. And I “make like them” — I do my utmost to match them, their behaviors, their activities. And it works. I do a damned good impression of the person I want to be — even when deep down inside, I’m having a hell of a time adhering to my own standards.

The gap between who I want to be/what I want to do with my life, and how I actually am and what I actually accomplish is, at times, a vast chasm. I have so many weak spots that feel utterly intractable — and I need to do something about them. So, I use the outside world to provide the impetus and stimulation I require to be the person I know I can be, and to accomplish the things I long to do. I use the supports I can get, and I use whatever tools I have on hand. I fashion the world around me in a way that supports my vision of who I can be and what I can accomplish in my life. and I just keep going, layering on more and more experiential “shellack” that supports my hopes and dreams and vision.

Dear reader, if you only knew how different my fondest hopes and most brightly burning dreams have been from my actual reality throughout the course of my 4 decades-plus on this earth, you would weep for days, maybe weeks. But this is not the time to cry. Not when I have within my reach the means by which to put myself on the track I long for. Not when I have the resolve to take my life to the next level. Not when I have — at long last — the information I need to understand my limitations and my cognitive-behavioral makeup. Not when I have the drive and desire to live life to the fullest, to love and grow and learn and … and …

But enough — the day is waiting, and I have things I must get done.

Peace, out

BB

Getting beyond the broken to find the brilliant

I’ve been pondering a lot of stuff, lately… Going through the motions of my days, trying to see where things are working well, and how they’re working well… Doing inventories of my strengths along with my challenges, so that I can “map” my strengths to my issues and so find solutions to long-standing problems.

I’m working with my diagnostic neuropsych to identify the issues that were called out in my testing — in particular, issues with compromised attention, my difficulties understanding what’s going on at a given point in time (and which parts of that action really matter), as well as communication skills. It’s been pretty humbling, to sit there and find out that all is not as well with me, as I thought for so long.

Now, I have traditionally thought of myself as a fluent speaker and writer, but the more closely I look at my style of writing and speaking — especially when under pressure — the more I can see places where I could really use an overhaul of my skills. When I’m just chatting with someone or I’m blogging away, I do just fine and dandy. But in professional situations, or in situations which call for deliberate focus and economy, well, I’m kinda lost. I tend to ramble, throw out odd details, get sidetracked on tangents, and generally take a very winding, circuitous route to where I’m going… if I get there at all. I often get lost in the course of a conversation, and then I just let it drop. Like a rock. It’s a bit uncomfortable for people I’m talking to, I have observed, but I haven’t really known what — if anything — I could do about it. I didn’t understand the nature of my problems, and I certainly couldn’t figure out how to fix them.

It’s so strange to realize this now. Nobody ever really called me on my communication issues before. Maybe nobody noticed, so long as I was fun to talk to and my writing was entertaining. Or they didn’t want to put me on the spot and make me feel nervous or self-conscious. But now I have regular appointments with a trained professional whose judgment I trust, who’s calling out specific instances where my situation assessment and communication skills are a whole lot less intact that I’d like to think they are. And I can start to address them… and allow myself to feel nervous and self-conscious with someone who doesn’t judge or think less of me… until I figure out a better way to do things.

I have also never given much extended thought to my difficulties assessing the salient points of a passage I read in a book, or a scene I watch in a movie, or interpersonal dynamics taking place near or around me. I freely admit that when it comes to social interaction, I’m often in the dark and I take my cues and clues off others. And when I watch movies, I don’t always follow what’s going on (that’s why I always watch with other people — so I can pick up from them what is supposedly happening). And when I read a passage in a book and discuss it with someone, I often find that I don’t understand it the same way others do. Or I’ll go back to it later and realize I didn’t pick up some of the important points, the first time through.

All these things were just stuff I took in stride, over the years. I never gave much thought to them — perhaps because getting into it would have been upsetting and distressing for me… perhaps because almost nobody else ever made an issue of it, and when they did (some of my teachers over the years), I frankly wasn’t following what they were saying, so I ignored them.

It’s quite easy to ignore people you distrust and cannot understand — like most of of the authority figures I’ve known in my life.

So, I went about my business largely untroubled by criticisms from outside my head… tho’ inside my head, I had more than enough, thank you very much.

Anyway, now I’m looking at my real issues with someone who has a clue about them — what they are, what they’re about, and what (if anything) to do about them. And this person is also keenly focused on helping people be the best they can be, regardless of their history and limitations. We’re on the same wavelength, I do believe — both of us are convinced that people are capable of much more than they think they are. And I have this person’s help in addressing my broken parts, to get to the brilliance.

People tell me, “Don’t pay too much attention to what’s wrong… You might get depressed.”

Possibly. But it’s a whole lot more depressing to have all these issues — and never fully realize the nature of them. Or to muddle through life, wading through sludge, when you don’t even realize that you’re up to your thighs in muck.

Personally, I’d rather know what’s “wrong” — that way I can do something about it. You can’t fix something if you don’t know it’s broken. And if you never make an attempt to fix it, you may never find out just who you are and what you’re made of.

Being broken can’t keep you from being brilliant. It just makes the expression of that brilliance a little more … indirect. A lot more challenging. But ultimately, perhaps, a lot more rewarding, than if it all came quite easily to you.

Onward

A do-over makes the difference

I had a dream about my diagnostic neuropsych last night. It was a really cool dream. We were trying — as usual — to find time on our calendars to schedule our next session, and we kept getting our wires crossed and missing each other when were trying to connect… and running into each other, when one or both of us didn’t have our schedule on hand. It was actually a really nice dream, because they were very kind to me during all of it, and the weather during the dream was sunny and bright and mild (quite unlike what it’s been like in real life for the past six weeks). And even when we were getting our wires crossed, there was still an element of humanity and civility to our interactions that was, well, civilized. It was breath of fresh air, in the midst of my dreamworld confusion. I woke up feeling a bit frustrated, but also very soothed.

I think I’m surprising both my neuropsychologists with my uncanny ability to not only get by in the world, but to also thrive. My diagnostic neuropsych says my ability to adapt and improve is “phenomenal” and they’re openly amazed at my ability to turn around wretched circumstances and come out on top. My therapeutic neuropsych is still handling me with proverbial kid gloves, taking it slow and trying (often in vain) to temper my eagerness to push my limits in life. Slowly but surely, they’re getting a clearer and clearer view of how capable I am of taking care of myself in some respects, while in others I’m wandering around in the dark. This post (however anonymous it may be… they may never read it) is dedicated to both of them.

I’ve been thinking a lot, lately, about the impact that TBI has had on my life over the years. I’ve also been thinking a lot about the ways in which it has not had an impact, or in some cases actually led to experiences and successes I might have never pursued, were I not neurologically compromised.

For example:

  • If I had been better able to interact with others and communicate — and understand what was being said to me — I might  not have pissed off and alienated the editors I worked with… and I’d be a published author by now. I might not have had to learn how to build web pages to put my writing online.
  • If I had been better able to handle heavy-duty job responsibilities, I might still be in middle-management (or even upper management), making okay money and having no life. I probably never would have learned to code (and might have resisted learning to use a computer till late in the game), and I may never have thought of going into the high-paying software business, where work-life balance is more precarious, but also more “customizable”.
  • If I had been better at risk assessment, I might never have traveled and moved around as much as I have. I probably would have “known better” and played it safe, never seeing the outside of my home state, let alone the USA. I probably never would have considered living abroad, if I’d been able to make it just fine, here at home.

Funny, how that works. A lot of what I’ve done over the years, no “sane” person would do — I’ve taken big risks, personally and professionally, and I’ve probably been luckier than I’ve been smart, over the years. But long story short, it’s all turned out pretty damn’ well, and this morning, I’m sitting in my own study… in my own house… overlooking my own back yard in a gorgeous and very affluent part of the United States. I’ve got (somewhat dependable) cars that are paid for in the garage, I’ve got a kicker job, and I’ve got a spouse who loves me with all their heart sleeping in the master bedroom. I’ve got family who love me (as inscrutable and problematic as I may be at times), and I have friends who love, appreciate and support me. I’m not the richest (or even the most solvent) person on the planet, but I’m getting there. Even without the money thing all hammered out, I’m one of the richest people I know.

It’s Independence Day, so I suppose today would be a great time to talk about how I’ve managed to do so well for myself, even though I’m most definitely neurologically compromised. Despite no less than nine mild traumatic brain injuries (one assault, three falls, three car accidents, two sports concussions, and probably more injuries that I’ve completely forgotten and just took in stride — gotta get back in the game!), I’ve managed to really thrive in the world, taking things as they came and learning a lot as I went. I’ve had more near-disasters than I care to think about, I’ve had a number of brushes with mortal danger, and I’ve had to rebuild my life over again, more than once.

But in spite of all that, I’m happy, healthy, more or less whole, hale, and hearty. And I have been for years. I have issues. Of course I have issues – who doesn’t? I have experienced tremendous difficulty in navigating things that other people take for granted, and there have been plenty of times when I was flying blind. But for all that trouble, I’ve still managed to do well. When life gave me lemons, I made lemonade. And lemon meringue pie. And lemon drops. And I seasoned my cooking with lemon zest. Figuratively speaking, I’ve eaten and drunk a helluva lot of lemon-flavored stuff over the course of my life. Sometimes it was sweetened, more often, it wasn’t. But I took the bad with the good and did my best with it.

I’m not going to say my TBIs were “the best things that ever happened to me,” as I’ve heard others proclaim. That would be a lie, for they have made my life more complex and painfully awkward than I ever wished it would be. But I will say that my injuries have been a lot less logistically debilitating to me than a lot of people (including trained professionals) seem to think they’ve been — or should have been. And I believe the reason I have done increasingly well over the years, is, I never gave up. A whole lot of times that I messed up, I got a do-over… and I took another shot at what I screwed up the first time.

It’s true. A do-over makes the difference. All those times I mucked up what I was trying to do… I can’t even count them. I’ve messed up relationships, good jobs, simple Saturday chores, volunteer activities, money management, health concerns… you name it, I’ve probably made a huge mess of it, at some point or another. But as long as I got a second chance, it wasn’t the catastrophy it might or “should” have been.

Second chances are like my lifeblood. They’re the stuff that keep me going. People who know me say I’m too hard on myself, when I think that I’m going to mess something up when I first try it. But they haven’t walked in my shoes, and they haven’t seen what a terrible mess I’ve made of so many simple things.

Like the time I was jump-starting my car for the first time on my own. I’d seen it done lots of times by plenty of other people. I knew how you put the clamps on the battery terminals and let your car charge off the other running car. I’d even helped other people jump their cars lots and lots of times. But the first time I tried to jump-start my own car, I got the terminals mixed up, and sparks started to fly and the plastic around the handles started to melt, as the wires heated up to a bright glowing red. I grabbed a stick and managed to pull the cable handles off my battery before both batteries blew up, so no animals were harmed in the making of that movie. But things could have turned out worse, and we could have ended up with two busted-down cars, instead of one.

And like the time when I was putting together numbers for work, collecting all these performance stats to show upper management how well we were doing. This was, needless to say, a very important report. Well, I found a set of numbers that fit the criteria we were looking for, and I compiled this great-looking spreadsheet with graphs and everything that showed our performance over such-and-such a time. Everyone was pleased as punch with my work… until they saw that I’d pulled the wrong numbers from the wrong timeframe and the wrong servers. My end-product was fabulous, but it applied to an alternate universe. And my hours of work were for naught.

And like the time when I was making great progress on this website I was building. I did an awesome job at coding it up quickly and timing everything out so it would be ready to launch on schedule. The only problem was, I forgot to test it in this one browser that everybody knew was problematic. It had completely slipped my mind. And by the time I looked at the website in it and realized that stuff needed to change, I was starting to fall behind schedule. For someone in the web development business, this is just basic, fundamental stuff — you test in all browsers before you launch. But I’d forgotten. And I blew my deadline. And pissed off the project manager who had been so happy with my work — and had told everyone what a great job I was doing.

I can assure you, screwing up the first time around is not a foreign experience to me. But each of the times I’ve screwed up, I’ve learned a great deal. And frankly, I’ve learned more from my failures than from my successes. I just needed the chance to try again.

All I’ve really ever asked for, was a second chance. Seriously. I know I’m prone to make a mess of things on my “maiden voyages”. It’s just in my nature. I’m not being hard on myself. It’s objectively true. Ask anyone who has known me long enough to see me go down in flames… and they’ll confirm it. But they’ll also confirm that I have an uncanny ability to rise from the ashes of my own catastrophes, take my medicine, take my lumps, and climb back into the ring for another round. And when I get my head about me again and figure out what I did wrong, the first time through, I can adjust my performance to do the exact opposite… and come out shining far more brightly than many a person who gets it right the first time around.

When I look back on my life, I have to say the worst experiences and relationships and jobs and activities I’ve had, have been made that way by lack of a second chance. Sadly, my father is one of those people who has to have things done 100% correctly, the first time through — or else. And my mother has not always had the most patience with my flawed interpretations of her instructions. They got it honest — all my relatives and neighbors and other people in the area where I grew up were geared towards getting it right the first time, or else. They had no tolerance for messing up terribly, the first time through — especially by someone as ostensibly smart as I was. They just couldn’t see why I was so prone to screw-ups. Certainly, I must not have been paying close enough attention. Or I was lazy. Or I was weak. Or whatever.

What they just couldn’t see was that I was trying like crazy to get it right, the first time through. I was — I really was. But I didn’t have enough information about how to do it 100% right. Spoken instruction only went so far. Being shown things only went so far. I had to try my hand at things and find out what not to do, in order to find out what to avoid, the next time around. The times when I got a dry run to practice, I was more likely to succeed. But when I was tossed into the deep end, the first time through, I sank like a rock, as often as not. And there were far too many failures to list — and far too many occasions of people not thinking to give me another chance. If I screwed it up the first time through, what made me think I could get it right, the next time?

Thing of it was, I could get it right, the next time. In fact, the worse mess I made of my endeavor, the first time through, the greater the likelihood of me hitting a home run, the next time around.  My very low tolerance for imperfection would never allow me to make the same mistakes twice. I just couldn’t do it. Unfortunately, too many people are not built that way, and they don’t realize that some of us are. They think that true achievers get one chance and one chance only to make their mark, and if you have to keep trying, it means you’re just a wanna-be poser whose prone to biting off more than they can chew.

Well, maybe I am a bit of a wanna-be, and maybe I do tend to bite off more than I can chew. But you know what? I’m driven. And I don’t give up. And if I keep trying, and if I keep learning from my screw-ups (which are so, so many), and I don’t give in to the criticisms of others (and myself), I can really make a difference in my own life and in the world. I can actually attain at least some of what I set out to achieve. And even if I manage to meet only 75% of my set goals, if I set my goals at 200% of what others expect me to be “reasonably” able to do, then I have a chance of achieving 150% of what others expect of me. So there.

And that to me is what true Independence is all about —  knowing both your limits and your strengths and using them both to complement each other. I know I make a mess of things. I know I have a hard time with some pretty basic stuff, at times. I know I tend to overstep my bounds and over-reach. But I also know I’ve got this taproot of faith in cause-and-effect… this logical conviction that if I just keep going, feeling my way through, keeping an open mind and actively learning and putting what I learn into action… I will eventually get far beyond what anyone ever expected of me. And I will achieve nearly everything I have my heart set on. No matter what my brain may be capable of, I also have heart. And my mind — the sum total of my spirit and my brain-power and my instincts — will always keep striving for what is better, what is best, what is highest, what is … progress.

Yes, when it comes to getting things right, a do-over makes the difference. I may mess up the first time through, but a second chance makes everything better. It lets me redeem myself by getting it right the next time. It gives me the opportunity to salvage my experience by using the lessons I’ve learned to make right what I’ve done wrong. It lets me prove to myself that I’m not a total loser. It lets me prove to others that they can — ultimately — depend on me, if they just cut me a little slack and give me another chance. They simply need to resist the temptation to give up on me… understanding that I’ve got my limitations, and that I may need another shot, in order to get the task they’ve given me absolutely right, but I will not quit until I get some satisfactory results.

I can get it… I will get it. I just need to be given more chances to get it right.

Constructing a common-sense strategy for tbi recovery

I’ve spent much of the past year or so taking a long, hard look at the issues I face each day, thanks to my history of TBI. I’ve been hit in the head and knocked out, I’ve fallen a number of times, I’ve been in car accidents, and I’ve generally had a rough-and-tumble life that has left me woozy, out-of-it, forgetful, uncoordinated, temperamental, and terribly disorganized and unmotivated — in fits and starts — for most of my 40-some years. Over the course of my life, I’ve developed a number of coping mechanisms that have helpd me get by in life, cover my tracks, appear far more functional than I am, and generally keep up the appearance of being entirely functional and “with-it”… far in excess of where I’ve really been at.

But when I fell down the stairs in 2004, a lot of those coping mechanisms stopped functioning. And I came to realize, over the course of the past 4-1/2 years, that they may have seemed to work, but they really didn’t. Not for real. I was doing a darned good impression of getting along, but much of it was an act, designed to shield and shelter myself and others from the underlying issues that I’ve had for many a decade.

And I realized — for the first time, perhaps — that I am in no position to go running around doing an impression of myself. I want to BE myself, even if that self is broken in places. So, I commenced with my testing and my self-assessments and my introspection and a whole raft of activities that were designed to explore the dark underside of my experience.

I’ve cataloged my issues in a fair amount of detail. I’ve reoriented myself from avoiding looking at my troubles to looking them square-on and facing up to them for real. I’ve become much more self-questioning (in a positive sense), learning to question the stories that my brain is telling me about how it’s doing… and how I’m doing overall.

I feel as though I have a good amount of data collected. I’ve stored it in various places — in numerous notebooks, in spreadsheets, in databases. I’ve logged it on computers and on servers. I’ve written it down and collected it. And I’ve developed what I think is a pretty good practice for examining myself and seeking the objective truth about where I’m really at in my day – and my life.

Now it’s time to do something with it. Get past the simple observation and recording of information, and start to work with it. Work with my therapeutic neuropsych to craft some common-sense living solutions. Work with the various bunches of data I have about the problems I run into and the solutions I’ve found that help me overcome them. Take the data and turn it into information.

I am in the process of working with my diagnostic neuropsych on getting a summary report together about the findings from my testing. We’re going over not only my deficits and difficulties, but also my strengths and assets. It’s taking a while, because I keep having to stop them and ask for clarification. But I have enough information at this point to start logging the data into a database and then use it to map my strengths to my difficulties, and figure out ways I can creatively and intelligently address my impairments (be they great or small) by using my strengths.

And I’m doing this, using the new skillset(s) I’m acquiring at work — and which I will need to have in place, in order to be viably employable in the future. I’m using everything I have to address the things I don’t have… to understand my limitations, frame them in a way that makes sense to me, and lets me not only overcome them, but use them to my ultimate advantage in the world.

Information, after all, is only as useful as you make it. And now that I’m actually getting an official version of what the story is with me and my brain, and I have someone I can bounce ideas off — with both neuropsychs — I can design common-sense approaches to dealing with my difficulties that get me back on my feet — for real.

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.


The fall of the spider monkey

I actually didn’t get to see my diagnostic neuropsych yesterday. They had a family medical emergency to deal with in the p.m., so our session got pushed off a bit.

It’s a bummer, too, because I could have really used a sympathetic ear. It’s not like I want someone to sit around and pity my — that’s about the worst thing ever. But I could use an hour or two with someone who actually understands that I’ve got issues and is focused on me dealing with them in a constructive manner.

The new neuropsych therapist I’m seeing has been very helpful to me already. They’ve helped talk some sense into me and helped me deal with some logistics in my life. But they seem to be into “tough love” — urging me forward with my life to do the things I need to do in order to be a viable individual, and not cutting me a lot of slack in the process.

It’s really a change from my last therapist, who was into helping me “get in touch with my feelings.” They were really into my emotional well-being and talking about things that had happened to me in the past, and how I felt about it all was a big part of each session. It was also completely new for me to be having those kinds of conversations with another person. What I feel and how I experience emotions is something that’s always been reserved for the inside of my head and heart. I don’t wear my heart on my sleeve, and I have no interest in doing that. So, having those kinds of “how does that make you feel?” conversations with another human being was new and different for me.

And as much as I balked at it — at first, and continually over the past year or so (including today) — I kind of got used to it.

So, now it’s going away, as my “touchy feely” therapist (God love ’em!) is retiring. And my new neuropsych therapist (I’ll call them NT, versus ND, for “Neuropsychological Diagnostician” who’s done the testing with me) is completely different.

NT is way into logistics (from what I can tell), making sure I’m staying on track with my job and my marriage and my daily responsibilities and doing all the things that normal regular people do in their lives, MTBI or no. They’re part coach, part sounding board, and they don’t actually seem that comfortable talking about emotional stuff. Or maybe they’re holding back to see where my tender spots are, so they don’t push me too hard and push me over the edge.

When I first met with them, being nervous and apprehensive and anxious about starting therapy with a new person, I was on the verge of tears a few times, which I absolutely hate. I get nervous and angry with myself and feel so self-conscious that I get all teary and choked up. It’s not that I’m sad or emotionally distraught — that’s how my frustration comes out at times. How annoying…  It’s hard to have an adult discussion and feel like people are taking you seriously when you’re fighting off tears over every little thing. But that ‘s exactly what happened, the first couple of sessions I had with them.

So, maybe they think I’m really fragile and they need to handle me with kid gloves for the time being. Or maybe they think I’m unstable.

I did give them a list of my head injuries over the course of my life, so I’m sure they’re factoring that in, somehow. I get the feeling, sometimes, that they’re trying to see if I’m dangerous and prone to act out. That’s got to factor in, somewhere. I think I have told them I have a history of violent temper, and it’s only the two of us in that office, so there they are with me, being ginger and diplomatic and testing the waters.  Am I a caged animal? Am I just looking for a reason to act out? Am I a threat to myself and/or others? They may be wondering… watching… looking for a hint of threat from me.

Anyway, this starting period with NT is tricky. And it’s getting on my nerves a little bit. I want to be able to pick up where I left off with FT (“first therapist”) and just be myself and speak freely. But I have to remember NT is a new person, they don’t know me, they need to get their bearings. And I also have to remember that my sessions with FT were like this for over six months before they started to loosen up with me. And there were times when I did feel like I scared FT a little bit, so NT probably just has to get to know me, before our sessions really get some traction and we start talking about what’s going on inside me.

It’s going to take some time. I know that. NT does neuropsych testing for kids, so they must see kids coming in all the time who have real problems, and I’m not sure how many neurologically impacted adults they see in their adult counseling practice. It could be that they don’t see many at all. The thing is, I’m starting to feel like they are really very skeptical about how my head injuries have impacted me over the course of my life. It’s almost like they don’t believe me. Or they think I’m lying. Or they think I’m trying to tap the system for help from some state head injury program or get disability or somesuch.

Granted, there are a lot of people who do take advantage of the system. They do take advantage of the government and government programs. I have a sibling who does that — they’re highly educated, as is their spouse — and they have all the advantages in the world, yet neither they nor their spouse will work full-time, and they tap into government funds for help raising their kids. This is just so odious to me, I cannot even begin to say. With all the gifts and the privileges and advantages they have, they throw it all away — and their kids have been harmed by their choices. And if there were any way I could change that, I would. But they take their entitlement to the lowest extreme possible, and no one is served — least of all, them.

But that’ s not how I am. I have walked out of bad living situations in the past and have chosen to walk the center city streets of one of the country’s largest and meanest cities, looking for a doorway to sleep in, rather than seek help from a shelter or go find some agency to help me. That’s just how I’m built — I do for myself, or I don’t do at all. And when I talk about my problems and try to identify my issues, it’s not so that I can suck the scant resources from an already over-taxed social system. It’s so that I can come to terms with it all and get on with my own life.

I guess I just need to make that clear to NT. When I talk about the difficulties I’m having, they keep telling me things that make me think they don’t consider my losses to have been that great. Or they don’t think I have that many problems. They talk about how other people have trouble with memory… other people have trouble with physical pain… other people have trouble with understanding what people are saying to them… other people have trouble with sustained attention… Everything I talk about that is difficult for me to accept, that wasn’t there before my injuries but showed up afterwards… Everything I mention that I’m having trouble with, that I didn’t used to have trouble with… Everything that’s getting in my way, behind the scenes… Well, from what I hear NT telling me, that’s just life.

As though my problems aren’t really that extreme. Or debilitating. Or difficult to overcome. Maybe I’m making it all look too easy… Maybe I’m not being forthcoming enough about my issues and putting them in the right light. I’m not sure how to do that, though, because it’s incredibly difficult for me to actually talk about these things, to begin with. I don’t want to be afraid. I don’t want to be upset. I don’t want to be turned around and lost and have a hair-trigger temper. I don’t want this stuff to be in my life to the extent that it is, and it’s really embarrassing for me to even mention it aloud. It’s not normal for me. And it’s not acceptable for me. But when I talk about it, NT acts like it’s no big deal. Or that I should be content with what I have and not worry so much about what I’ve lost — if I’ve really lost anything at all.

It’s frustrating. And it’s why I wanted to see ND yesterday. Because the big point that ND made with me from the start, is that the injuries I’ve sustained have caused certain significant losses relative to me. Not relative to the rest of the world, which apparently often operates on a different scale than me. Relative to me and my abilities and my skills and my capabilities. My own baseline is higher than average. I have a lot of abilities that are well above average. I have God-given talents and skills and abilities that are measurably high-end (and here I always thought I was a total idiot!). But in the course of my life, getting hit on the head, falling, getting into car accidents, etc. have cut into my ability to make the most of those abilities. Sometimes,  they’ve stopped me cold. And unfortunately, my injuries have often happened at very critical times of my life, when I was about to move forward — or I could not afford, in any way, shape or form, to sustain a TBI, even an MTBI. So, the timing of them, coupled with the subtle (and unaddressed) impact of them, combined in some karmic double-whammy that knocked me out of the running, just when I was about to jump forward in my life.

I look back on my life and I see all the potential I once had. I see all the joy, all the excitement, all the vigor that propelled me through life. And I see all the hopes and the dreams I once carried. I see all the talent I had as a young kid who understood fairly complex geometric concepts from an early age, who wrote short stories and novellas from the time of grade school, who had such a consuming interest in certain topics and such an enduring ability to dig in and really relish what I learned about… I think about my teen years, when all the world was a fascinating oyster for me to explore… I think back on my early adulthood, how I was so very intent on doing the best I could do, being the best I could be… and how clear I was about what I was going to do with my life, what I was going to accomplish, what I was going to achieve… and how I always knew there was something inside of me that was so unique, so promising, that all the world felt wide open to me.

At least, that’s how it felt inside. Inside my head. Inside my heart. Once I got outside my head and started to interact with the outside world, it all fell apart. I couldn’t get my thoughts together. I couldn’t understand what people were saying to me. I couldn’t keep up with what was going on. I couldn’t follow through with much of anything. I would get so turned around, so tired, so frustrated, so backed-up, and so upset with myself for being so stupid around other people, that I could never get anywhere. I just couldn’t. I’d get my words mixed up, I would lose a lot of what people were saying to me, I’d misunderstand, but wouldn’t understand that I’d misunderstood…

And it would all go to hell. Again.

How I can explain this to NT, I’m still not sure. They don’t seem to think I have real problems understanding. Or maybe they do, and they aren’t showing it. Maybe they’re just trying to make me feel better about myself and not let me get hung up on my difficulties. Maybe they think I’m just lying about all this for some nefarious reason. All I know is, they don’t seem to think my difficulties are that big of a deal, and it’s disheartening.

It’s like having someone who’s colorblind tell me that I should be bothered by suddenly not being able to see different hues of green and red. It’s like having someone who is not physically fit telling me I shouldn’t feel bad about not being able to run up 20 flights of stairs, like I used to. It’s like having someone who has never had much money telling me I shouldn’t feel bad about losing 60% of my retirement savings to the market slide(s) of the past 10 years.

It’s all relative, certainly. But I do feel my losses grievously. And even if other people don’t know what it’s like to have what I had, I do. And I know what it’s like to lose it. And miss it.

Spidermonkey The closest analogy I can think of is that I’m like a spider monkey who lived up in the trees all my life — swinging from trees high above the earth, eating fruit and flowers, having a grand time galavanting to and fro…

… Until I fell and hurt myself and lost my sense of balance… and then I lost a finger… and another… and another… and then my tail was chopped off… and I lost the rest of my right front paw.

Progressively, I have lost the ability to jump and swing through the branches like I used to. I can’t hang from limbs and pick and eat fruit and flowers like other spidermonkeys can. I can’t get up into the highest branches, where I used to swing without a care. I can’t just galavant, to and fro, and be a monkey.

I’m grounded. Stuck on the forest floor with the capybaras Capybara, who are content to graze and forage on the ground, who have no need for tails, and perhaps never gave a thought to spending any time up in trees. And who certainly don’t miss the sight of blue sky above the vast canopy of treetops – because they’ve never seen it.

“What’s so terrible about being on the ground?” they ask me. “Why be upset — there’s plenty of grass and plant life to eat down here… You should be grateful to have what you can get. Why would you want to be swinging around up there, anyway? And why would you want a long tail like that? Seems to me, it would just get in the way!”

It’s an imprecise analogy, I know. And it might not make sense to some. But sitting in session with NT, it’s how I feel. Being told that ‘everybody has problems’ with memory or pain or whatever other problem is holding me back, doesn’t help me come to terms with the fact that I’ve lost it. That part of my personality is gone, that my identity has been compromised. And it may not be coming back. Maybe I’ve been deluded, all these years, thinking that my life could have been any better than it was…

But you know what? My life used to be better in some ways, than it is now, and nobody can take that knowledge away from me. I have lost. And I have lost a lot. And I’m trying like crazy to build back what I can. If I just throw up my hands and say, “Oh, well, I suppose that’s my lot in life, I should just be grateful for what little I have,” it may make me feel better in the short term, but it flatly denies what I feel in my heart — that I am capable of more and better than I have been doing… that there must surely be some way for me to make the most of what I have and build back at least some of what I need… that I don’t have to settle and I don’t have to resign myself to a disabled life.

I have lost. I have lost a lot. And it sucks. But that’s not the end of the story. It never is. I am not giving up, and I am not going down this road to make less of my life than is capable. I’m going down this road to make more of myself than I am now, or was before. Even if I have fallen. Even if I have been hurt. Even if I have lost things along the way, I can’t give up. Not now. Not ever. No matter what anyone says — even a well-meaning, highly educated and professionally experienced therapist.

In the end, we all have to make peace with our limits. And make of them what we will…

A constant restlessness

I am still reflecting on the past couple of meetings with my diagnostic neuropsych, thinking about what they’ve said about what happens to the brain when it is injured. One of the things that keeps coming up is how I am so prone to agitation and just losing it over little things. It’s pretty dismaying to me,when it happens, and sometimes it feels like I’m just watching myself from a distance, while my broken brain hacks and slashes at my composure.

One of the things that people don’t seem to talk about much, is now badly behaved TBI can make you. The bloggers I follow rarely admit to being a terror to the ones they love, or being unable to control their moods and temper. I myself am reluctant to admit it, too. And I think the fact that I’m anonymous makes it easier for me to do it. If nobody knows who I am, then they won’t know that this normally good-natured, positive-thinking, personally engaging, dynamic, hopeful, optimistic, can-do kind of person has another side that they keep to themself, and have to work really hard to keep in check.

It’s tremendously disconcerting, when you suddenly find yourself unable to be the rock you used to be. That you’re not chill and level-headed anymore, and that every little thing gets to you. It’s no fun, feeling that crescendo of agitated rage rise inside you, as you hang on for dear life, holding back the tide of wild fury that has come from nowhere, makes no sense, is not your idea, and has a life of its own. It’s awful, when you’ve spent most of your life on honing your self-control, to watch your brain spin out of orbit and crash into whatever is in its path.

I think that’s why nobody ever talks about it. Plus, we live in a society that tells us any of the following, sometimes all of them.:

  • If you can’t hold your shit, there’s something wrong with you.
  • You’re not trying hard enough.
  • You’re being a poor excuse for a man.
  • You’re being a bad, bad girl.
  • You have character flaws.
  • You’re riddled with character defects.
  • You’re sinful.
  • You’re lazy.
  • You’re a bad seed.
  • You’re corrupted.
  • You should be punished.
  • You’re a threat to yourself and to others.
  • You belong behind bars.
  • You’re not allowed around regular “nice” people.
  • Nobody wants to be around you.
  • You still aren’t trying hard enough.
  • You’re a quitter.
  • You’re a really poor excuse for a man… or a woman.
  • Etc.

So much of our American mystique has to do with being able to control our destiny. And that includes being able to control ourselves. We’re not supposed to have lasting injuries, like TBI and PTSD, that take a cognitive-behavioral toll. We’re supposed to be able to overcome them, just like we overcome poor schooling, a disadvantaged birth, discrimination, prejudice, sexism, violence… you name it, we’re supposed to be able to overcome it. And we’re supposed to be able to do it on our own. Because we’re Americans.

Amer-I-CAN!

Not Ameri-We-CAN, but I-CAN.

But what if that’s not actually true? What if not everyone actually has the resources to make it on their own? What if someone who sustained a Mild TBI in a car accident needs help with some basic cognitive skill-building, but their insurance company decides that’s just not a worthwhile investment? What if someone falls at their construction job and has trouble seeing and coordinating their movements, so they can’t swing a hammer and hit a nail anymore? What if a child playing youth hockey gets checked hard and hits their head on the ice, and spends the rest of their school years struggling to keep up (if they keep trying at all), being poked and prodded by teachers and coaches to “buck up” and “buckle down” and do the level of work they “should” be able to do?

What if there is more to it, than all that? What if being able to stay chilled out and not have temper flares is about more than character, about more than willpower? What if our precipitous reactions to every little thing is about more than being too ‘lazy’ to hold it together? What if our brain is far more powerful — and far more fragile — than we ever guessed?

This is something I’m working through gradually. My temper issues. My agitation issues. They are getting in the way and keeping me from doing what I know I need to do — learn the materials I need for work. My agitation is distracting me with a constant restlessness in my brain. A constant rambling roaming that pulls my attention in every possible direction except the one I should be focusing on at the moment. I’m so keyed up and so nervous and so agitated and anxious that every little thing around me takes on massive importance, and I not only get distracted by every little thing, but I also blow up over nothing.

Which is not good for the people I live with.

And for years, I’ve felt really guilty over this. Why can’t I keep my shit together? Why can’t I hold myself in check? But now my diagnostic neuropsych has been feeding me tips about how the brain behaves after MTBI — there’s a constant restlessness that’s there… a constant level of agitation that can’t be shaken. The first time I heard them say that, it really clicked for me — suddenly things made sense. Suddenly, I heard someone saying out loud that I wasn’t mentally ill because I was so on-edge so much. They were saying it was my head injuries that produced this.

What a relief! For a few moments, anyway. And then it sank in that this constant restlessness may be with me the rest of my life. That doesn’t make me happy. But at least I know about it, now. And I can start to take steps to either remedy it, compensate for it, or avoid situations where it causes me real trouble.

The work continues. And I’ve got stuff I need to get done today. Maybe I can channel some of this restless energy into something productive.