Okay, FINE, I’ll self-assess!

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

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

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

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

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

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

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

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

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

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

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

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

I can do better than that.

And so I shall.

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Solutions-Oriented TBI Recovery

I’ve been having a pretty good month, so far. Actually, the goodness goes  back to late November, when I planned and completed a very successful Thanksgiving. It wasn’t successful in the “worldly” sense — it was successful interpersonally and individually. I managed to make it through the holiday without a meltdown, without a breakdown, without total loss of all control, and with a presence with those I was with that I cannot remember ever having had at that time of year.

Now the next spate of holiday activity is coming up. Two families in several states await the pilgrimage of my spouse and myself. It’s going to be even more rigorous than Thanksgiving. Twice as much driving, four times as many families, probably about 20 times as much activity. And this, over the Christmas “break” when everyone will probably be on the road.

I’m being smart about it, planning ahead, pacing myself… Not taking on too, too much at work, but managing (sometimes just barely) to keep up with my workload. Just thinking about it all makes me flush with excitement/dread. But that’s the nature of the game we play at the company where I work, so if I don’t like it, it’s my own danged fault for staying in it… or it’s up to me to change it.

I’ve  been having some pretty amazing revelations, too, with regard to my recovery. I’m reading again, which is a miracle in itself. I’m also able to sleep 8 hours at a stretch, now and then (last night was such a night). And I’m actually awake before 11 a.m., thanks to the daily wake-up exercise routine. I’ve also discovered that, even if I am planning on doing some exercise in the morning — like outside chores that promise to wipe me out — I still need to do my exercise routine to wake myself up, before I do anything else. No compromises, no shortcuts.

My neuropsych has been, well, psyched about my recent breakthroughs. The fact that I’ve been able to manage several extremely challenging travel/family situations in the past five months… the tremendous progress I’ve been making at work… the exercise and the better choices… the difference in my outlook and how I do things, each and every day… not to mention the revelations that I’ve had about what I’m truly capable of… it’s just floored them. Part of me wonders if they’re really amazed, or if they’re just trying to encourage me. But I trust them and their judgment, and I believe them when they say they’re just amazed at my progress.

It’s true. I have been making incredible progress. I have Give Back Orlando to thank for that, as well as my neuropsych and the materials I’ve been reading. One of the main ingredients that’s been critical in my rebound from teetering on the brink of financial ruin and homelessness (I’m not kidding), a few years back, has been the approach I’ve taken to my recovery. Ever since I realized I needed to recover — to rebound — from my fall in 2004… not to mention a lifetime of multiple periodic concussions… I’ve been focused not only on understanding the nature of my issues, but also devising solutions for the issues that are tripping me up.

Indeed, when I look back at my concussive life — starting when I was a young kid, on up through my late 30’s — I can see a pattern, an approach, that has served me well in rebounding from my falls and accidents and knock-out attacks. That pattern/approach was temporarily hidden from me, after my fall in 2004, so I literally forgot how to recover. But when I started getting back, I started to get back into this pattern, and it is helping me as much now — probably more, since I understand the underlying issues — as it did when I was trying to get through my childhood and adolescence and young adulthood after my different injuries.

I could post a laundry list of all my issues — and I probably will in a later post — but I haven’t got time for that right now. Suffice it to say, I’ve got a raft of them. Tens of them. And they cause my trouble on a daily basis. Now, looking at them all by themselves (which I tried doing, a few years back) just gets way too depressing. Seeing my issues for what they are — serious and threatening to my way of life and everything I hold dear — is necessary, true. But if I’m going to recover and rebound, I have to focus not on the problems they cause me, but the solutions I develop to deal with them.

If you’re interested in figuring out how to recover and rebound from your own issues — whether they’re TBI-related or some other sort of cognitive-behavioral bugaboo, like PTSD — I’m happy to share what I do — and have done for as long as I can remember — to get a handle on my issues and overcome them, day after day. (Note: Clearly, I’m human, and some days are better than others, but this is what works best for me — and I have a very successful and fulfilled life to show for it.)

Here’s the approach I take:

  1. I figure out what I want to do. I establish a goal or a desire I wish to fulfill— Like getting out of the house in time to make it to work by 9:30 a.m. I write down what I’m going to do.
  2. I plan my approach and try to prepare as best I can — I collect everything I’ll need for the day, the night before, set my clock early enough to get up, and talk myself through what I’m going to be doing to get out the door at a decent hour. I write down the steps I’m going to follow, in the order and time I plan to follow them.
  3. When the time comes to accomplish my goal, I make a point of focusing completely on it, and I do my utmost to achieve it. I also write down the things I did, and if I don’t make my own goal, I write that down, too, and make a brief note of why it didn’t happen. — As in, I get myself up, do my exercise, and prep for the day. I make a note of what I did all along the way — not lots of notes, but little notes so I’ll remember later. If I can’t manage to get out the door, I make a note of why that was (such as, I miscalculated the amount of time it would take me to eat breakfast, or I forgot that I needed to take out the trash and clean out the back of my car) so I can go back and think about it later.
  4. Over the course of the day, I continue to write down the things I am doing, if they are working or not, and I also look back at how my day started, to put it all in context. If my late morning arrival at work threw off the rest of my day, I can see how it all comes together, and I can also shift my schedule a little bit (like take some things off my plate) so I can catch up with myself again.
  5. At the end of the day, I take a look at how the day went, and I make a note (mental and written) about the things that stopped me from achieving what I wanted to do. I think about this as I plan my next day — if I’m not too tired, I can sometimes head future problems off at the pass. For example, if I was late getting out the door on that morning and it screwed up my day, I can look at what I’ve got going on the next morning, and make changes accordingly. Like double-check my list of things to do, and do them ahead of time. Or set my clock earlier, so I have more time to get things done.

I do this every day, just about. Yesterday, I was really late for work, and I didn’t get to do some things I was  supposed to, because I had forgotten to do some essential chores the night before. I realized, over the course of the day, that I was very tired from a full and active weekend, and I did not rest enough over the past two days. I also realized that when I get tired, I tend to push myself even harder, so I needed to not drive into work today, but work from home. Working from home lets me move at my own pace AND it lets me get an afternoon nap in, which is very important — especially with the holidays coming up.

And all along, I consult my notes. I don’t try to make them all neat, but I do try to make them legible and leave room for other notes in the margins ans I go through my day. Making notes of why things didn’t work out is actually more for consideration throughout the course of the day. I don’t spend a huge amount of time with neatness and completeness. The point of writing it down is more for developing mindfulness around the things I did not manage to get done when I planned to. And giving me a point of reference, when I’m starting to get overwhelmed, as I tend to do.

All in all, the system works for me. It’s solutions-oriented, and the only reason I pay attention to my problems, is so that I can overcome them. I refuse to be held back by these issues, which can be dealt with systematically and logically and logistically. If I have certain problems with fatigue and overwhelm, I can take steps to head those problems off at the pass, or address them in the moment they come up.

This orientation towards goal-oriented solutions is the only way to go for me. It puts my issues in a context that is empowering, rather than defeatist. It also cuts them down to size, by breaking them into smaller and smaller pieces, which I can take, one at a time, to overcome them. When I look at the mammoth iceberg of issues I have — all together at one time — it quickly becomes overwhelming. But if  I break them down into “bite-sized” pieces and tackle each one at a time, AND I attack them with the purpose of achieving the goals I set for myself each day, I can make some real progress.

And I have. And I continue to. Almost by accident — but with a lot of great help from a few key resources — I have come up with a blueprint for addressing my TBI issues, one at a time. And it works. The proof is in my life, which just keeps getting better.

So… work. So what?

My current therapist tells me I should not work so hard. So do other people who care about me. I’m sure they mean well, but they cannot see how much work it really takes to make me as functional as I am.

I work my ass off. Regularly. As a matter of course. My body is dotted with little bruises from too much contact with my everyday life. And my head is spinning with the details I have to keep in order, and reminders to use the tools I’ve developed for myself to manage it all.

My head is a playground for efficacy and my body is a scarred-up old warhorse that has seen plenty of battles. The net result: tremendous success, by any measure. But plenty of pain and anxiety and suffering in the meantime.

I go out of my way to obscure the “clatter” of my start-stop-faltering-resuming life from the ones I love, because I don’t want to hurt them, and I know from experience that they feel pain when they see me going through things that cause them pain. So, I just don’t bring it up. And I work-work-work away-away-away, to get myself through life. I just want to get from Point A to Point B to Point C and so on, without the hindrance of other people’s discomfort. I sincerely don’t want to harm anyone who cares for me. And I keep the laborious nature of my adventures to myself.

It works for me — pun intended. Or is that a double-meaning?

Anyway, I’m feeling strong this afternoon. I work-work-worked this morning on some really important tasks. And I work-work-worked on tracking my progress, which I have not done in about a week. I’m thinking it would make sense for me to do my regular check-ins on weekends (preferably Sundays), so I can focus on them fully. The rest of the week, I’m too busy working, to spend a lot of time recapping and assessing and checking in.

Then, I lay down and took a nap, while listening to Belleruth Naparstek’s CD on “Stress Hardiness Optimization” for helping first responders and people in high-stress situations manage their stress level. My whole life is a first-responder situation — I’m the first on the scene at all my catastrophes, and I’m the one who has to pull my ass out of the fire or back from the brink, time and time again, before anyone has a clue that I’m as close to disaster as I am.

It’s one of the hazards of keeping your difficulties to yourself — you’re on the hook for fishing yourself out of the drink, if you go overboard in rough seas. You’ve got to make sure your life jacket is always strapped on tight, that you can swim properly, and that you haven’t eaten anything in the last 20 minutes that might give you the bends.

That takes work. A lot of work.

So what?

It’s not like it’s not worth it. It’s not like I have a choice. Oh, certainly, I could sit around and feel sorry for myself — Poor me! — and sit on that pity pot all the live-long day. Sure, I could rail at life for setting me up for failure. I could moan and bitch and complain at my crappy fate. I could resist with all my might, and refuse to do the Work that Life requires.

But where would that get me?

Nowhere.

And who would care?

No one.

All anyone would know — or see — is that I can’t manage to do a damn’ thing with my life, that I just keep screwing up, and what the hell is wrong with me, anyway, for having so much potential, yet doing so little with it?

I have a theory — everyone has great gifts, and everyone has great potential. It’s the people that have to work the hardest to bring it out, who experience the greatest payoff.

I want my payoff.

I have an evening’s worth of achievements waiting for me. Back to work…

But I’m not afraid…

Well, it looks like I’m going to be dropping my current psychotherapist. After working with them for 6+ months, I’m seeing a regular pattern that I’m not comfortable with — every new piece of information I reveal about my past injuries and difficulties, and my present challenges, increases their trepidation about my present activities and my future prospects.

How many times can you sit in a room and have someone tell you that your hopes and dreams are unrealistic, given your neurological profile?

How many more weeks am I supposed to spend making room in my schedule for someone who actively discourages me from living my life — and paying them to do it?

Okay, granted, I do have a lot of difficulties and challenges, and no, it’s not easy. But the thing is, I flatly refuse to give in to the lot of it. I just refuse. I am not afraid to live my life, I am not afraid to stumble and fall. I am not afraid to take on new challenges and see what I’m capable of doing. I’m more afraid of never trying something, never taking a risk, never finding out just what I’m made of.

I have been injured, this I know. I have my challenges and difficulties. That much is clear. But I’m not afraid to step out and do what I need to do, to move myself along my life’s path. I have one life, and one chance to live it. If I sit by the sidelines, like this therapist apparently expects me to, I just don’t think I can live with myself. That’s not living — that’s surviving. Subsisting. And I’m built of better stuff than that.

I also have excellent resources on hand to help me along — namely, information and promising stories from Give Back Orlando and other sources — that provide me tools and orientation to get my life back in order. The vast majority of the issues I have are logistical, and if I just modify how I do things, tweak the execution a bit, I can get myself on the right track, and keep myself there.

There’s no mystery to it, no matter how mystifying the brain is. Bottom line is, my mind is what runs things, not just my brain. And when I devote more attention to being mindful, well, that solves a ton of problems out of the gate.

It’s when I’m not mindful — when my broken brain gets the upper hand and convinces the rest of me that it’s just fine, going it alone — that I get into trouble.

Real trouble.

So, my problems are by and large fixable. And the ones that aren’t, I just avoid like the plague. I delegate things to others who know better how to do them. I solicit help from people who are just dying to lend a hand. And I richly reward people with ample thanks and a ton of praise. I feed them, and they help me. And vice versa. It’s all good.

The one major problem I have, is I’ve got a psychotherapist who seems to be afraid of their own shadow. I dunno — I think within a certain context, they’re perfectly fine. At least, they were, three months ago. Maybe I’ve just grown a bit. Maybe I’ve just evolved. And their orientation is no longer helpful to me. That could be. I have been known to shift very quickly, and it wouldn’t surprise me if I were advancing in a sudden burst along my recovery.

But they don’t seem to recognize that, and they keep cautioning me against doing things like taking on responsibility and following down a career path that leads to more money. Just yesterday, they were telling me (as though I don’t know it) that more financially rewarding jobs entail more sacrifices from those who hold them. Uh, excuse me? Is that something they think I don’t know? I’m not so sure they realize who I am and what I’ve done with my life. I’m not sure they realize that it’s possible to live productively and radically well, even after a bunch of concussions. But even with me sitting right in front of them, telling them about how well I’ve been doing lately, they can’t seem to see it. Or they distrust it. Or they distrust me.

This makes me nervous. It makes me very nervous, indeed. And I woke up last night from a nightmare about a wildfire sweeping through my neighborhood, driving all these wild animals ahead of it. (Not sure how the lizards and wildcats and wildfowl got into the suburban neighborhood in my dream, but I’m sure that symbolism is all about me and the less “civilized” aspects of my personality.)

Warning bells are going off, and it looks like I’m going to be shopping for a new psychotherapist again… Fortunately, I’m seeing my neuropsych this afternoon, so I can ask them if they know anyone who specializes in therapy within a brain injury recovery context. They’re on the same page as me — totally devoted to realizing all the amazing possibilities of life, and refusing to settle for less — so I have more faith in the resources they might recommend.

The bummer is, the current therapist I have is listed as someone the Brain Injury Association in my state recommends. I’m not sure if I should mention my experience to them, as I don’t want to trash them. But if they’re running this head trip on me, what might they be doing to others?

I have to wonder.

Anyway, it actually feels good to be coming to this decision. I’ll talk it over wiht my neuropsych and see what they have to say about it, and then I’ll move from there.

{ Sigh }  This rehabilitation process can be a tiresome road at times. But it sure beats the alternative!

Onward.

Get on the bike and ride!

Well, I had another good meeting with my diagnostic neuropsych last week. I’ve been having a lot of trouble sleeping, and they’ve been helping me figure out some possible solutions. After detailing my issues and trying to get clear on when I started having trouble sleeping, how much trouble I’ve been having, and what has helped/hurt me in my quest for rest, I finally remembered (about an hour into the discussion, which is so annoying) that back in July, I was riding my exercise bike first thing in the a.m., and it was helping me wake up better than I had been waking up in a long time. I was also sleeping better, then, than I had been in months.

Now, this sleep business is a tricky thing, and it’s never that straightforward, but by gawd, it turns out that my neuropsych was elated that I’d been riding the exercise bike, first thing. They really got excited by it. It just helps in so many different ways, and if I can have good results from exercise, versus a medication, for my insomnia, so much the better.

So, I got back on the bike. The following morning, and the morning after… and this morning, too. Riding vigorously for 20-3o minutes each morning before I do anything else wakes me up and makes me feel 20 times more alert than I do, if I just have a cup of coffee and try to get into my day. It is just a vastly superior solution for me, on so many different levels.

I know I’ve got issues with attention and wakefulness and being alert and being with it. And a lot of those issues are vastly improved when I exercise vigorously in the morning before I have my breakfast. If I can manage to work up a sweat and get my heart rate pumping, I feel like a completely different person.

And this did it for me this morning, too, even after having a pretty rough weekend that has knocked the wind out of my sails in a number of ways, physically, cognitively, and emotionally.

I’m not 100% yet, but I’m getting there. And getting on the bike and riding is one of the tickets to a full recovery.

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.

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to http://www.givebackorlando.com/, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

  • they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
  • they attracted attention from people who didn’t like what they had to say, who made them take it all down
  • they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
  • they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
  • the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
  • they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
  • some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.