I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

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A learning life is the best rehab for me

Tomorrow is Thanksgiving, and today I’m traveling to my extended family, several states away. I expect the traffic to be heavy, and I expect the trip to be long. I’ve spent the past week preparing myself for this mentally, emotionally, physically, and spiritually. I’ve consulted with my neuropsych, I’ve checked in with friends, I’ve been eating right and I’ve been working out and stretching regularly. Last night I actually got eight hours of sleep.

This year is very different from past years, in that I’m not pushing myself up to the very last minute when my spouse and I hit the road. I’ve been taking it easy, taking the different tasks in manageable pieces, not biting off more than I can chew, but keeping on task and on point. And I’ve been using my timer, to make sure I stay on schedule.

This year is also different, in that I called my parents ahead of time to find out what the plan was going to be for the next few days. I checked the weather, too, so I could be prepared to offer suggestions. I’ve requested that we just take Friday “off” and relax and do some light activity outside — the weather is going to be beautiful, and I would really like to spend time with my folks, just hanging out and talking.

I am also planning to share with them the findings of my neuropsych evaluations and work. I’ve made tremendous progress, over the past year, and I want to share the info with my parents in a positive and constructive way. I haven’t been able to do that, till lately, as I’ve had a lot of reservations about my progress (not helped by my psychotherapist, who has been trying to talk me into “accepting” (i.e., giving up on) my limitations and settling for less of an amazing life than I believe I can have.

I’m not sure how they got to be that cynical, but I’m not on the same page with them, and I am certainly not going to settle for less, just ’cause I’ve had some misfortunes along the way.

Anyway, I’ve been giving a lot of thought to how much progress I’ve made over the past year or so. My neuropsych says they are encouraged and inspired by my progress, which is great. I’m really happy I can return the favor of their assistance. I really have come a long way. A year ago, I was pretty turned around, I didn’t have much direction, and I was very muddled and confused by the ramifications of my issues. I had a long way to go, to figure things out.

My previous therapist wasn’t helping matters, by constantly focusing on what my mother did, as a source of my woes. I invested a lot of time with them, essentially being led down the wrong path — it wasn’t necessarily my mother (or my father) that was the root of my issues. It was more the neurological context in which I was living in my childhood — all those unidentified, misunderstood, pesky issues that complicated and intensified every experience I had, and had me “pegging” emotionally and behaviorally all over the map.

Now, I have to say, my current psychotherapist has helped me regain my balance from before. I think my previous therapist was trying to regress me, to find some deep, dark secret hidden in the innermost recesses of my psyche, so they could exorcise my demons or something like that. And my current therapist helped me regain my balance by helping me focus on the logistics of my day-to-day life, rather than floating around in the distant past. And I am very grateful for their help (tho’ I have to move on now).

Indeed, I think the thing that has helped me the most, over the past couple of years, has been the help I’ve gotten in dealing with my everyday life — keeping my issues in mind, understanding them and how they impact me, and getting to the bottom of the problems I can expect to have, given different situations. Being aware of patterns, like:

I get tired after a full day of intense activity, and when I get tired, I have a tendency to get turned around and agitated, which adds to my internal confusion and throws gasoline on the fire of my temper… and really contributes to me melting down over every little thing

helps me immensely, and it also helps the people around me to help manage and anticipate my issues before they get completely out of control.

And one of the big things that helps me identify my patterns is examining my life on a regular basis. I take a lot of notes, and I record a lot of my experiences. I look back on my days and weeks, and I watch for issues and patterns that emerge over time. I write down the times when I am having a really hard time of things, and I identify the contributing factors. And I draw pictures of my problems and the “flow” I use to deal with them. I work with my life — the failures and the successes — as my own individual recovery plan and practice. And I see results.

Real results. Like promotions at work. Like improved relationships with others. Like a more creative approach to my life, overall. If I can get past the old bad habit of being so hard on myself, and I can treat my difficulties as challenges (from the outside — from my faulty wiring — rather than from my inside character or personal worth) to be tackled creatively … challenges just waiting to be overcome… well, then, the ultimate results of my examined life are tangible improvements, the likes of which I never thought I’d see happen.

Truly, this is remarkable. I always thought — before I knew why things were always getting so screwed up with me — that I was flat-out doomed to failure. I had precious little expectation that things would ever turn around for me permanently… I figured it was always just a matter of time, till things got mucked up for no reason I could identify, and everything I’d worked so hard for just went away, swallowed up in the sinkhole of my life.

But now that I’m paying attention to the basics, and I’m following up to deliberately study the results of my actions and see how they can be improved… Now that I’m treating my life like the miracle that it is, and I’m studying my daily “playbook” with focus and intention, and I’m refining my approaches, based on what I know about my limitations, I no longer believe that I am stuck in endless cycles of attempt-failure-attempt-failure-attempt-failure.

My life is different now. Because I’m living it differently now.

And it’s good.

In case you’re wondering how I go about doing this, here’s the basic flow of my practical-life-recovery-plan:

  1. I figure out what I want to do. I understand why I want to do it, and how it fits in the overall picture of my life. For example, I figure out that I need to exercise first thing in the morning, and I need to really work up a sweat, because I have been feeling a little sluggish lately and I need to “pump up” my system a little more.
  2. I do it. And I track what I do. For example, I do my morning workout, but I don’t manage to work up much of a sweat.
  3. I figure out if I accomplished what I set out to do, and if I succeeded, I celebrate in some way. If not, I ask myself why that is. For example, I make note that I worked out — and I congratulate myself for doing that — but I didn’t work up a sweat, and I wonder why.
  4. I figure out why I didn’t accomplish exactly what I set out to do, and I ask myself what I can do differently to change that the next time. For example, while I’m having my breakfast, I look at how I’m doing, and I realize that I’m tired and distracted. I figure out that I didn’t get to bed at a decent hour the night before, and I also see that I let to many errands wait till later in the day, which pushed my schedule back farther into the evening, so I couldn’t relax and get to sleep at a decent hour.
  5. I think of alternative strategies I can follow to make changes in my daily life, that will help me accomplish what I set out to do better today. For example, I spend a little more time planning my day in a way that will let me get my busy-work done first thing, and give me more time in the afternoon to take it easy and wind down.
  6. I go about my day and check in with myself periodically, to see how I’m doing. I make a point of remembering the goals I did not accomplish, which I really, really wanted to accomplish, and I work a little harder to keep myself in line. For example, I check my daily work list periodically to make sure I’m staying on schedule and make sure I’m not overloading myself with extra stuff in the evening.
  7. Last but not least, I follow up. I do a check-in later to see how I’m doing, and if I’ve accomplished the goals I set for myself, I celebrate and reward myself. For example, if I get to the end of the day without wiping myself out, I treat myself to a little bit of television, watching a show on cable that I really like. Or better yet, I make an early night of it and I get in bed at a decent hour, which lets me sleep and sleep and sleep till I’m actually rested.
  8. And then I do it all again the next day.

To some, it might sound arduous and like a lot of work, and it is. But it’s good work, and it’s really more of an orientation to my life, a kind of spiritual practice, if you will. In the Give Back Orlando material, they talk about how TBI survivors need to be more mindful of their lives, and I have found that to be very true. But even more importantly, I’ve found that I want to be more mindful of my life. Yes, it’s work, but I don’t mind the work. Yes, it’s different from how most people live. But I’ve never been like other people, so why start now — and why feel badly that I can’t be like them? I’m just fine, the way I am.

In the end, yes, it does take more work to live this way. In the end, yes, it is more time-consuming to do things that a lot of people do quickly and easily without a second thought. In the end, no, I don’t have as much time to fritter away on non-essential activities.

But in the end, the payoff is huge. I get to have a life.

Better yet, I get to have the life that I want to live.

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 ________?”

Or, perhaps more accurately, can LIVES be saved?

I had some feedback from one of my posts yesterday about Bob Woodruff’s recovery from TBI.

I didn’t like the article at all – in fact I felt it did a HUGE disservice to brain injury and rehab – it gave the impression that there were these wonderful cognitive programs that could restore people to their regular functioning in a relative reasonable period of time, that these services could be tailored to everyone’s particular needs, and that so much has changed that brain injury is ‘curable’.

The reality:

The is little funding still for most services, most insurance plans cover very little especially in cog rehab – which may be needed for years to be helpful.

Recovery of any kind is YEARS – not months, not a year or two but YEARS.

There are no miracle programs – this is slogging through a lot of really frustrating activity, going round in circles, making mistakes over and over and over, training yourself to be disciplined about organization, planning, memory skills, rethinking your life career etc

While  I appreciate the Woodruffs bringing attention to the issue Bob Woodruff got top ranked care – the vast majority of people DO NOT receive ANYTHING like that – they may get a few months of cog rehab, some PT, and a year of neuropsychological counseling. The existing services for TBI are terrible, un-coordinated, cookie-cutter, short term, and severely underfunded. 90% of the survivors DO NOT get any thing that is customized – most do not get even half of what they need that would truly empower them and enable them to have productive lives with true quality of life
VERY little is still understood about tbi – especially mild tbi. There are probably many many people who have TBI’s and don’t recognize it as such – they are just considered ‘moody’ or easily distractible or have other issues in relationships etc. We know virtually nothing about how the brain works and organizes data, repairs itself or re-organizes after a trauma. Much much more research and money is needed to allow professionals  to understand tbi, provide better tools for helping people recover (whatever that may mean), better ways to diagnose and to eliminate the stigma involved. 80% of tbi survivors do not recover their previous employment levels, and equal numbers experience loss of spouse, family and or friends, NO ONE wants to tell a prospective employer they are a survivor. Most tbi survivors do not write books or go on tours or have understanding supports – they end up financially destitute or in severely reduced circumstances, alone, struggling and often develop addictions as a result.

The article presented a rosy cheery picture of tbi – just like having a hip replacement  – tbi is a life-changing event and is underfunded and not understood. there are no ideal treatments and many people end up overdrugged – even by the ‘professionals’. I get frustrated by such articles because they mislead.

Some folks in advocacy agree with me and others don’t. Some feel that any attention  to TBI is helpful and that at least by making it less strange it encourages people to accept that many people do have tbi’s and are ‘normal’.  So I admit that my opinion is not universal. I will also say that this was the second brain injury article by that paper that focused on a well-connected individual who got amazing health care – and in this other case that person did make a phenomenal recovery – again, the kind of recovery that 99% of tbi’s do not make. So some of my frustration is also based on that. I would love to see a “Ordinary Jane or Joe has a tbi” story – and what it means to lose your career, to lose your home, to have a changed marriage, to try and re-create a self, to have 3 months of cog rehab and told you are ‘fixed’ because your insurance ran out – to struggle in school, at work, to lose your job – all these things that are what happen to most Americans – including our Vets.

Healthcare is a critical issue in this country and tbi is part of that. It will be ignored and forgotten if the true loss of lack of care is not made clear.

You know… it’s true. The vast majority of us who sustain these types of injuries never get the help we need — many of us never even realize we need it… until too late (or almost). Personally, I consider myself extremely fortunate to have put two and two together before everything fell apart for good. I was awfully close to the edge, now that I think of it. I dodged a bullet. And I am incredibly grateful for the combination of fate, the world wide web, and my local Brain Injury Association chapter, for helping me put this together… as well as to my various therapists and friends and strangers who had the right info at the right time, who kept me from tripping and tipping over that very precipitous edge.

Not all are as lucky. And I have been lucky. I am very much aware that I could easily have ended up in much tougher straits than I am, right now. It was almost a fluke, that I even got a clue that I needed help. And while I have had to work my ever-loving ass off to get the help I need, and it feels like it’s been a long time coming, and I still have a long way to go, at least I have had the personal resources to launch into this quest for clues.

A lot of others don’t. They just get lost. Pushed to the margins. Out of sight, out of mind, out of luck.

I hate to say it (and I’ve felt a bit guilty about thinking this), but I’ve never been that comfortable with Bob Woodruff’s story and the way he’s been portrayed as a kind of “poster child” for TBI recovery. It’s like they’re not telling us the whole story — like how he really is at home, what his moods are like, what his interpersonal skills are like, what his memory is like.  He’s an attractive public mainstream figure, who has received the best treatment possible and works in a field where his performance is not only scripted beforehand, but edited between the time he does it and when it is aired to the rest of the world.

I’m reluctant to say any more about him, because I am not thoroughly familiar with his work, and what I’ve seen of him has been positive. No-way, no-how do I begrudge the man his recovery or his restoration to broadcasting work. He’s covering some really important stories that I enjoy watching. But I wonder how much similarity his experience actually bears to my reality. Or to the reality of countless other tbi folks. I wonder how his irritability/anger management is, if he has constant ringing in his ears or constant headaches or other chronic pains. I wonder what truly goes on in the privacy of his own home, where no cameras are rolling and no editors are deleting the segments where he’s struggling to find the right word or remember what he was going to do when he walked into the next room. I wonder what his life is really like.

One of the things that I think may have helped him get back to work, is the fact that he works in broadcasting. Being involved in broadcasting, myself, I know how helpful it is to have a script to go by, when you’re doing your job. I often create and use “scripts” in other situations, like when I go on job interviews, or I am leading a meeting and following an agenda very closely. Having a scripted line of work (or work that follows specific guidelines, like strict meeting agendas, or has a heavily-project-managed element to it) makes getting back to work — and re-integrating into society post-injury — a lot more straightforward, in my mind.

It’s never easy, of  course, but if you know what you’re going to say and do ahead of time, and you have ample opportunity to practice, and you don’t have to be “on” for more than the length of the take/recording… and you get to edit out the parts of your performance which aren’t that flattering… well, I can see how you could present a really excellent picture of miraculously restored health after what was supposed to be a fatal accident that would — at best — leave you a vegetable.

Thinking back to the positive tbi-is-fixable article in Parade, I’m struck by the emphasis on the idea that outside therapies are capable of restoring functionality post-tbi. I don’t doubt that having someone work with you can be of tremendous help, but from what I’ve seen and experienced, what you do for yourself, with yourself, by yourself, can be a critical factor in the degree of your success.  Of course, it is important to get outside help — especially from trained professionals who have made the study and treatment of tbi their life’s work. But I also agree with the Give Back Orlando materials about outside therapy only going so far — at some point, the insurance gives out or the prescribed treatment runs is course, or therapy is no longer available or an option for you.  You then have to step in and run things for yourself, or you’re just not going to get that far. Reading about long-term efffects of TBI, what I’m struck by is that folks may improve over the first several years post-injury… but look at them 10-20 years later, and sometimes they’re really struggling. I think the critical piece in this is self-reliance and the ability to do self-therapy.

Personally, I suspect that my own self-reliance has been the secret to my repeated recoveries over the years — never having any help, and being forced to fend for myself. Not that I had any choice, mind you. My first injury was 36 years ago, and nobody had a friggin’ clue about mild tbi, back then. A year after that, when I had another more significant injury, it was worse, but not bad enough to send me to the hospital, and they probably would have just sent me home again, anyway. I’ve been hit on the head, fallen down stairs, fallen out of a tree, been hit from behind in several different cars, and I’ve had my bell rung more than once while playing contact sports, over the past 36 years. If anyone should be marginally functional and struggling in vain with basic stuff, it would be me.

But I’m not.  I do struggle terribly at times, and I do have some pretty problematic issues, but I usually manage to figure a way out of my predicament… eventually. I’m not destitute, and all my friends and family haven’t fled from me. I am not homeless, I am not out of work, I am not that terribly marginal — except to the degree I pull myself out of the mainstream frenzy to keep my balance and sanity. Best of all, I am not in jail (granted, I dodged the bullet of arrest a bunch of times, but hey – at least I dodged it, right?) Given just slightly different reactions and choices in many of my life experiences, I could easily have ended up in an institution of one kind or another. My own parents tried to get me committed due to my “inexplicable” behavior, about 20 years ago. It didn’t work, I’m happy to report.

Maybe I’m just too stubborn and too averse to acting/living/thinking like someone who’s brain-damaged. Maybe I’m too proud to give in. Maybe I like having a regular life too danged much to let go. Whatever the reason, I’ve been self-reliant and headstrong and stubborn from the start, and I credit my tenacity and determination to just keep going, regardless of whatever the heck life throws at me, with keeping me in the game.

Now, I wouldn’t recommend following my tumultous loner’s path to anyone — tho’ a lot of us are in this “boat”. It’s lonely and confusing and confounding and can drive you half mad. It can also really piss off everyone around you and cost you jobs and friends and family, and you have to work twice as hard after the fact to fix things up again. But at the same time, a lonely, isolated path forces you to develop a self-sufficiency and skills that you might not have to, if someone else were standing by your side, walking you through everything, checking in with you regularly, and keeping you on track.

It’s kind of like that “restraint” training that some stroke survivors do — to train the hand/arm/fingers on their impaired side to function again, they tie down the arm on their able side, so they’re forced to use the impaired side. And they can progress at rates quicker than those who don’t use this technique. I’m not sure if I even have a lot of “un-hurt” parts of myself to tie down. I’ve been pretty roughed up, over the years. But I’ve forced the broken parts of me to keep going, regardless, and it’s paid off.

That being said, what I think helps me the most as a long-term multiple mild tbi survivor who is not just surviving, but thriving, is:

  • keeping my spirits up,
  • staying intensely interested in all of life around me,
  • staying positive and solutions-oriented, and
  • having plenty of access to quality information — both from the internet and neuropsychologists who are available to me.

I wish to high heaven there were head-injury-aware neurologists who were freely available to chat with the tbi survivor population — maybe I’ll check with my local BIA chapter to see if they know of any — because I’d love to be able to ask them a bunch of questions about brain function (particularly mine) without needing to clear it with my insurance company. I need information. I thrive on it. Even if I don’t understand every little bit of it, and there are pieces that get lost along the way, still… it gives me a general orientation in how to live my life. And that helps. I need information to save my life. Literally.

That’s what it really boils down to, I guess — not so much about saving my brain, as saving my life. Sure, of course, I want to save my brain, but there is much more to me than what’s between my ears. There’s what’s in my heart — and in my gut. There’s what is in my spirit, as well as the sum total of my past experiences and all the invaluable lessons that have come from that. My brain may have issues that need to be dealt with, but ultimately, there’s a whole lot more to me than just gray and white matter segmented into various lobes and cortexes (or is it “cortices?”). There’s a whole person in here, with a lot more going on than the electrical impulses and connections between synapses and neurons and dendrites and whatever else is up there (that they know about or haven’t discovered yet, which I suspect is a lot).

And I think that’s also what gets lost, a lot of times, when people deal with TBI. They are so focused on the brain, on the individual functions of the brain that need to be restored or changed or compensated for, or whatever, that they can lose sight of the rest of themselves that is so very vital in dealing with their new brain, their new personality, their new self. The old brain is gone. The old self is gone. It’s not coming back. It can be a terrible loss, and it does need to be recognized and grieved. But at some point, you’ve got to let go of the idea that things can be the way they were before. They can’t. You may be able to get back to a semblance of your former functioning, but the old ways of doing things are gone-baby-gone. It’s a tragedy. There’s no two ways around it.

But that’s not the end of the story. The good news is that for every old way that’s gone, there are lots of new ones waiting to be discovered and developed. The brain is an awfully big place (its size notwithstanding) with a wide, wide world of possibilities. The human spirit is enormous, with more capabilities than we can ever imagine. The body is also capable of incredible changes and adaptations that can compensate for plenty of problems. I’m not trying to make light of tragedy and loss, or make it out to be less serious than it is. It is serious stuff. And it is a terrible, terrible thing when it happens. But there is a whole lot more to us, than we can ever imagine.

And until we put our minds to it, we can never begin to find out just how much is in there.

So, while I do often wonder if brains can be saved, I’m ultimately much more interested in how lives can be saved. It’s not always about what’s in our heads that counts in life — it’s what’s in our hearts.

My books have arrived from the library!

I’m really stoked. I finally managed to find a library copy of George Prigatano’s Neuropsychological Rehabilitation After Brain Injury and Prigatano & Schacter’s Awareness of Deficit After Brain Injury.

I’m sure it sounds odd for me to be so excited about getting them from the library, but these are books I’ve been wanting to read for some time. I first came across George Prigatano a little over a year ago, when I was researching brain injury and wondering why in heaven’s name I had never realized there was something “up” with me. I mean, I had a lot of problems when I was a kid and throughout my adulthood. Problems with memory, problems with mood issues, problems with keeping track of stuff, problems with temper, problems with freaking out over every little thing, problems with money management… I get tired just thinking about it all.

I should have realized a long time ago, that all those problems couldn’t possibly have been due to everyone/everything else. Something had to be “up” with me. But no… my broken brain was convinced it was everybody else, not me, that had the problem(s).

Anyway, now I’ve got the books on loan for three weeks — and the past-due fees are high, so I’d better get reading. I’m sure it’s considered a little “blasphemous” and presumptuous for me to be reading up on cognitive rehabilitation and advanced topics that are supposed to be beyond this layman’s brain, but I don’t really care what other people have to say about it. I have access to the information, and even if I don’t understand everything, at least I’m going to check it out.

My wrists are doing a little better. I’ve worked almost 30 hours in the last 2 days, much of that time spent typing, so I still have more resting I need to do. But that will come. Right now, I want to celebrate.

Celebrate life. Celebrate recovery. Celebrate cognitive rehabilitation. I saw my “neuroshrink” today, and we actually had a really good session. I was talking about different events of my past, and I actually got a laugh out of them. A good, hearty, spontaneous laugh, too. In the past, they’ve been kind of reserved and distant, like they were checking me out… not sure if they were going to keep working with me. But today was a good session.

They told me, in the course of our 50 minutes, that considering everything that’s happened to me, my life is a great triumph, not a tragedy. And yes, it’s true! My life is a tremendous triumph, and I’m feeling really grateful tonight that I’ve been able to do as well as I have.

How I’ve been able to do this well — bounce back from multiple mild tbi’s, including sports concussions and falls and assaults and car accidents, and build a life that’s full of activity and love and productivity and, well, happiness… I’m still trying to figure it out.

But if I had to chalk it up to anything, I’d say it’s just stick-to-it-ive-ness. Never giving up. Being tenacious. Stubborn. Hard-headed in the right ways. Trying and trying and trying some more. And never settling for less than I want — and deserve.

Just keeping going… in some ways, that’s the best rehabilitation of all. None of the other approaches actually work that well over the long term, if you don’t have this as the foundation.

But still, tenacity aside, it’ll be good to check out these books. It’ll be good to have some input that comes from outside my own head and immediate experience.

I’m also looking forward to reading more writing from George Prigatano. I have been a huge fan of his for quite some time, and what I’ve read from him I’ve really enjoyed. It might sound odd to talk that way about a neurologist, but everybody’s partial to something. Some folks are into Japanese art, some are into road bikes, some are into Turkish ceramics, some are into Dice-K, some are into the Cavs. I’m into neuroscience. Particularly cognitive rehabilitation after brain injury, and all the fascinating aspects of life that go with it.

And I do mean “fascinating”. The brain really is the final frontier, and despite the fact that everyone has one and we all love to talk about ourselves, precious few of us — scientists and doctors, included — seem inclined to talk about our brains and the way they impact our lives. It’s as though there’s this huge curtain drawn between our white/gray matter and the rest of us… a kind of holy-of-holies veil that keeps us from approaching the Ineffable Massiveness of what sits atop our shoulders and between our ears. I can’t account for the reticence, in general. It’s like everyone is running around talking about everything except their brains… like we’re trying to keep our minds off it.

Or maybe it’s just so close to home that it makes people waaaaay too nervous to approach, and anyway, we’re taught that unless we have degrees and qualifications, who are we to discuss such weighty matters? It puzzles me. We all have brains. We all love to obsess about ourselves and our human conditions. Yet we’ll invest countless hours in dissecting the life choices of Octomom, while remaining oblivious to the Real Drama that takes place inside our skulls, each moment of every day.

I can’t account for it. But it’s getting late, I need to rest, and there will be more time tomorrow to ponder these imponderables. And read the words of  George Prigatano.

When TBI help is not helping

I’ve been thinking a lot, lately, about how I never got any diagnosis, rehab or therapy help for my MTBI’s (until the past year or so), and how that has affected my life. I’ve been seeing a therapist who is a neuropsychologist, as well as a diagnostic neuropsychologist who has helped me understand a great deal more about how my TBIs have affected not only my brain by the rest of my life, as well. And it’s great to be getting this help — and to be able to talk to friends and family members about my TBIs in ways that are helpful and actually informed.

But I have to wonder if maybe one of the reasons I’ve been able to function as well as I have (in certain ways) is because I’ve gotten next to no “TBI help” from people in my life. Nobody ever recognized (as far as I could tell) that being knocked out, falling down stairs, and/or being hit on the head a bunch of times, could have as big an impact on my cognitive and behavioral expressions as it did. Nobody ever approached me as someone with special needs who needed special attention, and whose needs should be accommodated.

To be clear, I had a lot of problems when I was a kid. The falls and sports concussions and the attack that knocked me out when I was eight appear to have skewed my behavior to the extreme, and I was pretty tough to handle at times. But all through my childhood, difficult as it was, I was never cognizant of having “problems”. I thought it was everyone else who had the problems, not me. I didn’t perceive myself as being different — in part because my parents never treated me like I was different, just difficult… in part because I think my perception was so anosognosic (I had no clue that I had no clue what was going on) that I couldn’t self-assess and self-regulate at all.

Granted, it’s no fun growing up being told that you’re lazy and a bad seed and that you’re just not trying hard enough.  It’s no fun having all the authority figures in your life yell at you, make fun of you, chastise you in public, discipline you, and generally hound you to do things you have a really hard time doing (if you can do them at all). But all the messages from my childhood that I internalized that took a toll on my self-esteem, as an adult, I can nowadays reason my way past them and reverse their impact simply by understanding that they just weren’t true.

Now, if I had grown up with the belief that I was damaged, broken, deficient… and that there was nothing to be done about it, other than compensate and make concessions and get special treatment from the powers that be, I think that might have taken an even greater toll on me. Because it would have been true. Irrefutable. Definitive. Sort of. I could totally see myself falling into this state of resignation over my broken brain and just never having any hope of building a real life for myself. I might have given up and become even more marginal than I was — not because the rest of the world didn’t understand me and my mind was having trouble wrapping itself around its difficulties, but because my spirit would have probably been broken, and I would have ushered myself to the margins and just been glad for what little I could get from life… hiding in the corner and sneaking out when no one was looking to gather crumbs that fell off the proverbial table.

I think, too, never having an explanation for why everything was so damned difficult for me all the time, actually helped me. It didn’t give me a reason to quit trying. All around me, throughout my life, people with expectations were giving up on me. Parents. Teachers. Grandparents. Aunts and uncles. Neighbors. Cousins. Just about anyone who had expectations of me had them dashed in short order. No matter how hard I tried, I just couldn’t seem to get it right. But I didn’t have a reason to stop trying. I was never told, “You’ve been injured — permanently — so why bother?” I was never “reassured” that it was okay to fail. I was encouraged to go easy by some people who lost faith in me, but I never gave up on myself, and I never lost faith that somehow, some way, I would figure out how to get done what I set out to do.

I just wasn’t giving up. I didn’t have any tools given to me, that I can recall, other than try-try-again, and I had to come up with a lot of systems of my own, but I did try-try-again and I did come up with systems. And somehow, some way, I did manage to build a pretty impressive life — and resume — in the process.  It’s been a long, tough row to hoe, and I’ve been knocked down more often than I care to think about, without people offering me a hand up. But you know what? I can bounce. That’s what I do. I bounce. I’m like one of those Weebles. I wobble, but I don’t fall down — permanently. Sure, my self-esteem is for crap, a lot of times, and I automatically disqualify myself from activities I messed up as a kid, which I could probably do now that I’m grown. But I’ve figured out how to keep moving, keep progressing, keep advancing… even in the total, utter absence of self-esteeem.

Surprisingly (compared to what I hear said all the time), you don’t actually require ironclad self-esteem to get stuff done in the world. In some ways, having severe self-doubts and low self-regard can keep you honest and working hard.

Now, I would imagine that TBI folks who receive formal rehab and are given tools to use to get by in life may have a more pronounced sense of ability because they receive guidance and training and rehab therapy that is meant to reassure them that they can do what they set out to do, and is designed to return them to functionality. And when they bump up against the upper limits of their capabilities, it may come as a surprise. I think that would be even more upsetting for me than not realizing you have problems, and encountering problems, time after time. I think that would eventually take a huge toll on my spirit. I would think, I’ve been shown strategies and given tools. Why aren’t they working? What’s wrong with me? Am I really that messed up? Why am I not getting better?

I wouldn’t know exactly what it’s like, because I’ve never had real rehab or occupational/speech therapy. But if I were getting rehab therapy, I would probably be inclined to push the envelope of my abilities, and I’d probably fall flat or run out of steam over and over and over again — and be really pissed off that things got mucked up. I should be rehabbed, right? That’s just me. I don’t know if others experience that, as well, but knowing myself and my tendencies, that’s probably where I’d be.

Another thing that I think might happen with people who get rehab and whose friends and families know about their head injury, is that they get moral support and encouragement from their various relationships, but when they muck up, they get that subtle (and often unarticulated) message that it’s okay for them to be less functional than they’d like to be, ’cause they’re brain-injured. So, they shouldn’t feel so bad about it. And maybe they shouldn’t try so hard… maybe they should just accept themselves as they are and settle into the kind of life that has been given them, rather than the kind of life they want to create.

I notice that happening in my immediate circle, where people close to me who know about my head injuries are trying to be loving and gentle, but they end up.. well, “emasculating” me in the process of my “journey towards wholeness”. I mean, it’s all very well and good for them to care enough about me to reassure me that I’m still a good person who has value, but it’s not helpful for me for them to downplay the importance of trying to do my best. It’s not helpful for me to have expectations lowered, and accept failure as a given. I’m still a work in progress, and there’s no telling how far I can go in life, given the right tools, the right approach, the right form, the right level of effort. But all too often, my circle of supportive friends and family seem to settle for accepting me as I am, which also includes accepting my screw-ups as being okay.

I wish they wouldn’t do that. I’ve got to have a talk with them about what I would like them to do.

For me, so much of doing well in life is not so much about innate ability, as it is about spirit and determination to develop what ability I have into something more. I think that’s something people lose sight of — especially later in life when full-grown adults (like me — I’ve got a birthday coming up, and I’m getting closer to 50 than 40 — when did that happen?) — are starting to wind down a lot of their activities and/or they’re accustomed to working with a set of abilities that they’ve honed over the years, but haven’t really worked at keeping up. And they figure they can just draw on what they’ve accumulated in the past.

For me, no matter how old I am or how much older I’m getting (and I’m damned lucky to be getting older, lest I forget how many close calls I’ve had in the past), I am not in a position where I can just slack off and accept things for what they are. If the rest of the world wants to retire and fade away, I’m not going to stop them. If the rest of my peers are going to quit improving and honing their abilities and making as much as they can of what talents and interests they have, I’m not going to stand in their way. But for me, I have to keep moving, keep improving, keep at it. And I have to not take any of my “innate” abilities for granted.

Doing that is inviting disaster.

That being said, I really think people need to be reminded that none of us has any guarantees in life, and freedom is never free. It’s entirely up to us, what we choose to do with our talents and interests and abilities, as well as our injuries and setbacks. Just because you have experienced an injury does not mean you’re any less able to improve than anyone else. Or that you are entitled to work any less hard. If anything, you have to work harder — but remember, that hard work can really pay off. No, there are no guarantees, and you may end up expending a lot of effort for what seems like a relatively small pay-off, but if you take delight in the discipline of the work itself, and you get something out of just having at it with all your might, then the outcome — while important — does not become the be-all-to-end-all.

And the work itself becomes its own reward… As well as all the perks you get from building your character and inner strength while working your everloving ass off.

But it’s still work. And to do your best, you have to keep your spirits up. And to keep your spirits up, you need to not be constantly reminded that you’re less-than (’cause the doctor said so), or that you’re disabled (because the insurance company said so), or that you’re any less deserving of your place at the table in life. You need pep talks and coaxing of all kinds — gentle as well as matter-of-fact. You need supporters who support the person you can become, not just the person you appear to be at the moment. You need backers who are realistic and optimistic at the same time — not out of some pie-in-the-sky Pollyanna BS, but because they know for a fact that the human experience is a deep, deep mystery full of ups and downs and twists and turns and wrinkles and Burmese tiger traps, but what good is life, if you’re just going to sit on the sidelines and cry boo-hoo?

So, it’s hard. This is news?

Okay, okay… I understand the necessity of grasping limitations, but at some point, if you’re going to have a life, you have to grasp all the harder at the things you have going for you, the things that make you a viable human being, your positive qualities and strengths that enable you to see past your limitations… and even turn them around in your favor. No, I’m not really that pleased that I’m at an age when I “should” be able to settle into a comfortable routine and rest on laurels I started growing 25 years ago. No, I’m not thrilled that when my peers are being promoted into higher and higher positions and paying off their mortgages and starting to have grandchildren, I’m still struggling with the basics, like remembering whether or not I’ve shampooed my hair this morning. I’m not at all giddy about the prospect of having to keep lists of really simple crap I have to do for the rest of my born days, in order to get anything done. I would like to be able to kick back and enjoy myself after all these long, arduous years.

But y’know what? That’s not going to happen. Not if I want to have any kind of a life. And it does me no good to sit around boo-hoo’ing about it.

So, what’s the story I want to tell myself today about my life, to get me in gear and make peace with the hand(s) I’ve been dealt? I think about my ancestors, some of the first pioneers who were “sodbusters” in the Great Plains several generations ago. Okay, I don’t agree with them displacing the Native tribes on that land or tearing up the prairie grass that kept the topsoil from blowing away and ending up in the Mississippi, but there’s a quality to their experience and their characters that I need to access for my own purposes.

I come from pioneering stock. The hunger for the frontier is in my bones. My great-great grandparents didn’t cry and moan about having to trek to the outhouse in -40 degree weather and thigh-deep snow to relieve themselves, and they didn’t whine about having to clean up with rough corncobs and Sears catalogs. That’s just how it was. It was the price they paid for the chance to live on the frontier and make their mark and be free to do as they pleased.

They didn’t fuss and fret about tending to wounds without a doctor nearby. They didn’t wallow in self-pity when the grasshoppers devoured their whole harvest. They didn’t freak out when life didn’t work out the way they wanted. They buckled down and did something about it. Or they accepted what was, and they worked at dealing better with it all next time.

In this age of junk food, convenience stores, cheap furniture, easy access to worlds of information, trained professionals whose services are paid for by insurance, and more and more tools to figure out how to live your life, it can be all too easy to forget the element of struggle that life can bring with it. And the harsh reminders can be hard to take. But in the end, life lived thoroughly is often a tough, tough thing to handle, and not everyone is up to the job of urging us onto the high, perilous road that leads to True Success.

Whether they’re professionally trained or in our innermost intimate circles, the people who are trying to help us  might be doing us the biggest favor by not letting us fail gracefully, by not reminding us that we’re diminished, by not accepting our shortcomings as a matter of fact. It might be hard for them to be hard on us, and it might be hard for us to hear what they have to say, but sometimes you just have to bite down on that piece of rawhide, take a long slug of whiskey, and do your best to hold still while your buddy digs that piece of lead out of your arm, cleans it with that stinging sour mash, and ties it up so you can both ride on.

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.


Basic ideas behind recovery from TBI

I’m working my way through the Give Back Orlando book Teaching Yourself to Prevent Head-Injured Moments by Dr. Larry Schutz, and making mental notes as I go. I’m also highlighting. And I also need to record some of my own impressions here. So far, I really like the book, and it’s a good reminder as well as an eye-opener about dealing with TBI.

In the “whole document” version  of the ebook, on page 1, Dr. Schutz says this (and my comments are in bold):

Here are the basic ideas behind recovery from TBI:

1. Head injuries don’t heal up. The injury continues to cause problems in your life until you recognize that you have to fix it and get it done. Fixing means finding a better way to run your brain. The fix works only as long as you run it in the new way. So fixing your brain is not a job you finish doing—it’s a way of life.

True – my injuries did cause me problems in my life. A lot of problems, as I’ve had a number of TBIs. I’ve fallen down stairs, gotten knocked out by mean kids, gotten hit on the head and fallen, had sports concussions… and let’s not forget the car accidents. Problems I encountered for practically my whole life include:

  • sensory problems — painfully hypersensitive hearing, experiencing touch as pain, tactile defensiveness, crappy vestibular abilities, trouble hearing and understanding what people were saying to me
  • memory problems & learning difficulties
  • social problems — hard time deciphering what people were saying to me
  • meltdowns and spells of loss of consciousness/bodily control
  • trouble holding down jobs
  • trouble making and keeping friends
  • just trouble

It wasn’t until I started to get my head around the fact that my head injuries had led to these problems — and many more — that I started to feel like I might actually be able to have a decent life and do something about this mess I thought was all my fault.

2. Brain fixes are not obvious. The injury makes your brain send out a signal that you’re doing fine. Those who take this signal at face value don’t realize that the injury messed up their thinking skills, so they don’t learn to fix the problem no matter how many years pass. Survivors only get on top of the problem when they start to recognize that the brain injury is affecting them, and set about finding out what it has done.

Yeah, I’m fine! Or so my brain tells me. This is so true. I have gotten myself into so many tough spots, just because I wasn’t processing the signals properly. I’ve nearly been shot, and I was almost abducted (twice) when I was younger, just because I “boldly” wandered into dangerous territory without guessing things were amiss. I’ve taken on jobs that I had no business doing, and I’ve pushed myself past my limits, over and over and over again, thinking that I was fine and I could take on one more thing. The “one more thing” often pushed me over the edge and ended up frying my system horribly — and sometimes putting others in danger from my meltdowns. But my brain told me I was fine, and I could handle one more big undertaking on 4 hours of sleep!

3. The only good fix for a damaged brain is self-therapy. No doctor or psychologist or therapist, or for that matter, family member or friend or priest or minister or rabbi can fix you, because what is wrong with you is happening inside your head. You are running the programs you created to run your old brain. Those programs don’t work properly on your new brain. Until you learn to re-program the things you do, you’ll go on having head-injured moments, unexpected foul-ups that make your life harder.

It’s good to hear someone say this. I know my neuropsychologist and my therapist would love me to seek as much professional help as I can, and I shall. But there’s only so much someone else can do for me, and they can’t walk around with me, every waking minute, holding my hand, making sure I’m okay. Nor should they. I need to learn to stand on my own feet. Plus, even if I did have someone to assist me at a moment’s notice, they aren’t mind-readers, and they can’t fix what’s wrong — and what only I  know is going on, in there. It’s all happening inside my head, and I usually need to adjust and fix things on a moment’s notice. Trying to explain to another person WTF is going on with me, the context, the texture, the subtleties, is just not practical — or practice-able.

4. Most survivors never figure out how to fix the injury; they go on to have the problems for the rest of their lives. Fixing a head injury is unnatural, and it’s not easy to do. It’s not a common-sense process—if it were, most people would be doing it on their own. It requires watching yourself closely, changing your habits, and developing self-discipline. However, once you set up the new habits, it’s not complicated like rocket science. Once you set up a basic program of self-therapy, recovery begins to grow from there. Your recovery gains momentum, becomes more real to you, and feels more rewarding, the more you work your program.

How true, how true! The one “fix” I’ve found for my own issues, is constant vigilance and developing the habit of paying attention to my thought processes — and my actions. It’s not a natural thing to do, and it’s not easy. But it has to be done. Or else. The good thing is, once I got in the habit of paying attention to those things that were causing me problems, and adjusting as I went, it did become habitual. And my recovery has gained momentum.

5. Most people are accustomed to looking to their doctors to fix them when the problem is an illness or an injury. That is not likely to be a good strategy when it comes to TBI. Doctors receive no training on how to fix this injury, even if they specialized in neurology, psychiatry, or rehabilitation. In the United States, only a handful of doctors and other professionals are experts on how to fix TBI. You probably don’t have any in your home town. Your best bet is to learn how to do the fix yourself, and to get your family to help.

It’s a good thing I’ve never been that dependent on doctors. I guess my long history of TBI contrived to make me too ornery and too spacey and non-compliant, to be a good patient. Which is ironically what has saved my ass, up to a couple of years ago.

But ’round about 2007, I started down this diagnostic path, and I started to really dig into the whole medical thing with TBI and other medical issues I’ve been having. I got it in my head that I needed to give doctors what they needed to help me. But they haven’t had the willingness (the training?) to be of much help to me. Mostly, what I’ve heard from them has been “It’s just stress” or “It’s psychological” or (they don’t say this, but they imply it and their actions say it loud and clear) “You’re just trying to get attention, when there’s really nothing wrong with you.” Maddening. And my little brain has ingested that input and made my failure to get adequate medical help about me, rather than about the shortcomings of the medical system and typical medical training.

I may rail and rant about the problems with doctors, but there’s a part of me that thinks the real problem is me. I’m a bad patient. I’m a head-case. I’m not really in need of help. There are many other people who have real problems, and I need to get out of the way for them to get the help they need.

Unfortunately, after dealing with doctors for the past year and a half, I’ve gotten it into my head that being a bad patient makes me a bad person, that I’m not being helpful enough, that I’m not being “good”. But I have to seriously rethink this. And I have to say that, given my ability to recover and get on with my life, it actually saved me a whole lot of pain and suffering, to avoid the medical establishment, to not expect much from doctors and avoid them like the plague (except when absolutely necessary), and to find my own way in the world.

So far, it’s enabled me to just live my life. Which is more than I can say for how I’ve been feeling (and functioning) for the past year and a half.

6. You should not believe what anyone tells you about TBI. It has become a hot topic lately, so there are now many Web sites distributing partially accurate or even totally bogus information. Everyone claims to be an expert. If you have good sense, you won’t take what I say on faith, either. There are only a few reasonable ways to put confidence in what people tell you. The first one is the approval of professional credentialing organizations. <snip for brevity’s sake> These are major league accrediting bodies in TBI. However, there are also bogus accrediting bodies, so when you check out credentials, you also need to check out the accrediting agencies. Information is also likely to be more reliable if it has been published in a major professional journal. This manual provides you with a set of articles, chapters, and books that are expert sources for the information presented. Watch for the most important journals, such as the Journal of Head Trauma Rehabilitation and Brain Injury. Getting bad advice is awfully easy to do, and it can harm your recovery.

I’ll say! I’m starting to see more and more how lucky I am that I’ve been able to build my recovery outside of the medical/rehab context. Granted, it may have been helpful for me to realize that I had serious issues going on with me as a direct result of head injuries, but I think that not growing up with the idea that I was brain damaged did me a whole lot of good. Even though my brain was telling me everything was okay, when it wasn’t, the fact that I have grown up and moved through my adulthood with this blissfully ignorant self-confidence of mine, has worked in my favor. I haven’t been in the unfortunate position of soliciting information from charlatans and snake oil salesmen. I haven’t made myself dependent on “experts” for my strategies. I’ve been a lone wolf, for the most part, and while things have NOT been easy, I’m sure they’ve been a whole lot less hard, than if I’d been seeking out help on my own resources.

One of the big problems with TBI that I see, is that it makes it all the harder for us to seek out qualified expert help. It makes it hard for us to see what our problems are, in the first place. In order to ask for help, you need to know what exactly the problem is. That’s one of the problems with TBI and the medical establishment, from where I’m sitting — they rely on us telling them what the problem is, but if you are a TBI survivor, you may not even know what the problem is. Conundrum! So you and your doctor end up sitting there looking at each other like idiots, not sure where to begin, or even how to begin.

That’s been my experience, anyway.

So, the next problem that comes up, is that there are these charlatans and poseurs who claim to know WTF is going on with you and how to fix it. They prey on us, telling us what we want to hear, offering us what we so desperately need — “answers” of some kind about what’s going on inside our brains. They give us false hope, and/or they point us in some bogus direction, and/or they take our money, and/or they misrepresent us to insurance companies, so we can’t get coverage or additional help. And we’re screwed. Because we need help, but we don’t know how to get it. And the people who offer us the most are the ones who have the least to offer — and in fact, take away the most.

Like I said, conundrum!

7. You can get rehabilitation for TBI in almost any town in the USA, but most of it is not fully specialized. We have had effective rehabilitation in this country since 1978, and the knowledge of how to do it has spread slowly. I trained under one of designers of the original high-tech program. That approach is still the most effective method we have. If you have the $70,000, you should consider attending that program. It is located at New York University’s Rusk Institute of Rehabilitation Medicine, under the field’s founder, Dr. Yehuda Ben-Yishay. Expert programs are also offered at Barrow Neurologic Institute in Phoenix, Arizona, under Dr. George Prigatano, Robert Wood Johnson Rehabilitation Institute in Edison, New Jersey (where I trained), under Dr. Keith Cicerone, or Mount Sinai Hospital in New York, under Dr. Wayne Gordon.

This just blows my mind — as though it needs to be blown any more. We all have brains. Thousands upon thousands of people suffer brain injury each year. There are ways to fix what’s wrong. But yet, we can’t get easy access to this rehab, unless we have $70,000 and/or insurance that will cover it. Good grief. It’s so crazy and distressing, I can’t even comment on it further.

8. People who find a knowledgeable self-therapy teacher don’t always learn self-therapy. Many of them are not willing to learn. To learn self-therapy, you need to admit that you don’t know everything you need to know about your brain. Some people believe they already know themselves and reject the idea that someone else can teach them about themselves. If you believe this, self-therapy will not work for you. This guide book can help you only if you are open to learning things about yourself that you don’t already know.

Well, I am open to learning new things about myself. I am more than willing to learn. I have over 35 years of evidence that all is not right with me, and I need to make some changes. I’m not proud in this respect. I’m borderline desperate. Which makes me a pretty good candidate for this kind of work. Self-therapy is, as far as I’m concerned, just about the only viable alternative for me at this point, and I’m willing to do what needs to be done. Yes, I’ll seek out help from qualified therapists. Yes, I’ll get help from neuropsychologists. Yes, I’ll do everything I can to avail myself of the resources available to me. But at some level, I’ve got to do the work myself to fix myself. No, I’m not crazy for thinking this stuff can be fixed. It can. People do it. It’s been done. Why not me?

Indeed, why not me? I’m brain-injured, I’m in more trouble than I care to admit, I get into trouble constantly, I have plenty of head-injured moments through the course of each week, and I’m more than willing to do what needs to be done to address the situation. Most importantly, I am not prepared to live my life marginally, missing out on all the opportunities out there to learn and live and experience.

I am not prepared to be anything less than fully functional as a living, breathing, involved human being.

So, it’s time to kick it into gear and get on with the work.

Onward…