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.

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Keep it simple. Or else…

I’m discovering an interesting phenomenon with this blog… that correlates with other facets of my eventful life:

The tendency to complicate things and overwhelm myself. I am naturally inclined to break things down into little tiny pieces and focus on those individual pieces so intently, that the sum total becomes vastly complex, and I get overwhelmed with all the detail.

For example, I started this blog with the simple intention of recording my daily experiences as an MTBI survivor. Just to tell about what it’s like, so others can see how it is to live with a broken brain that doesn’t do justice to their brilliant mind.

Pretty soon, I feeling like I wasn’t offering enough “quality content” and I got caught up in doing all sorts of research and reading and going off on tangents to try to better understand something I was writing about. Comprehension and deeper understanding are admirable goals. All good, right?

Not so much. Because after a while, I started to lose track of what I was trying to do/say. And I ended up getting down on myself for losing my way. My brain couldn’t keep up with my mind, and I ended up in a vicious loop of diminishing effectiveness.

I go through this process with planning. I do it with doing. I do it with everything, from understanding personal relationship issues to parking the car. I get all enthused and discombobulated and turned around and swamped and confused and upset and discouraged with myself, and it takes a toll on my self-esteem. But then I regroup and figure out how to move forward, by breaking down steps into little tiny pieces and doing each one properly. But I need to be able to discern what is a reasonable level of complexity to indulge.

Here’s how the loop goes, in linear terms:

  1. I decide on a simple goal (recording my daily TBI-related experiences)
  2. I start work on that goal
  3. I make good progress, right out of the gate (I posted a whole bunch of stuff and found good info to share)
  4. I start thinking about how I can take it to the next level (I looked at some of my past posts and thought about what more I needed to know/say about them)
  5. I identify a bunch of different tangents to explore (TBI experiences, returning Iraqi vets’ experiences, more details on symptoms, medical research, psychological research, all sorts of research…)
  6. I go off on a tangent and explore that (I start reading up on impaired self-assessment)
  7. I get pulled into reading about other tangents (I start reading up on sleep deprivation, PTSD, military policy, alternative cognitive rehabilitation, alternative healing, complimentary healing modalities… etc.)
  8. I take notes and make outlines of what I want to write (I outlined at least three separate pieces I want to work on and identified various projects that move me.
  9. I get all motivated and fly into action on a handful of these things (I created of my headache journal, with several versions available, not only as PDFs but as coil-bound books, as well)
  10. I think about everything else that needs to be done, and I get overwhelmed with all the work involved (promoting my projects is a full-time job in itself).
  11. I get swamped by the details (I have pages and pages of planning, all of it accurate, all of it necessary, all of it overwhelming).
  12. I get stopped. I can’t ask for help, because by the time I get to a place where I’m stopped, my brain has become so immersed and inundated and absorbed in the details, that articulating any of it to an outside party is just beyond my abilities (I can’t even begin to explain to someone how things are supposed to work — to do that, I’d have to start at the beginning, and that’s so far back, I can’t remember anymore where I started, exactly).
  13. I have to take a break and go off and do something else for a while (I start other projects that motivate me, often with a completely different focus and using a different part of my brain — like drawing or programming).
  14. I start into this same cycle with these new projects, eventually get stopped with them, and then end up with a backlog of all this stuff I’ve started, but haven’t finished (I don’t just have articles I haven’t written, I have headache journals I haven’t properly promoted, I have artwork I need to have scanned, I have hobbies I would like to pursue… none of which are taken to fruition)l.
  15. I look back on my list of things I intended to accomplish, and I feel horrible about it all. I get down on myself, get stressed, get angry, get frustrated, get cruel with my brain… all the while conveniently forgetting that my cerebrum was compromised several times, once upon a time, and I can’t realistically expect it to do everything. For that matter, I can’t expect anyone to do everything I set out to do. There’ s just not enough time in the day, and until I have a full staff or can find someone to help me — with whom I can communicate — I’m going to have to scale back what I’m doing. Big time.
  16. Then I need to take more time off to recap, regroup, reprioritize, and see what I can reasonably expect to get done, so I can feel good about my progress and not be stopped anymore (I take some serious time away, do some “light” reading and/or distract myself with working in the yard, till I feel better… then I pull out all my notes from projects I’ve started, I work down through their status, and I pick out the ones that are closest to being done — the “low-hanging fruit”.)
  17. When I’m all sorted out and my projects are prioritized again, I make my list of things I need to do to complete each one, and I make “punchlists” of items, so I have some guidelines to keep me on track (I collect all my notes in 3-ring binders of multiple sizes, and I keep the notes for individual projects grouped together).
  18. I then take things one at a time and walk through each item, till it gets done. True, being systematic and logical about things is a lot less invigorating than flying into action and “losing myself” in a task. But it actually allows me to make progress.
  19. I try to build in some sort of rewards system for myself, so that when I actually complete something (I have very important projects still going on, that have been start-stall-stop for years on end) I can celebrate… and relax. Take the pressure off. I’m still trying to figure out what those rewards are. Actually, making money is the reward I crave most. So, all my projects need to be money-makers, or I’m just not content.

I really need to be careful that I don’t overwhelm myself. When I do, everything stops. And I have to take a break and regroup. Which works on myself-esteem and makes me feel like I’m “behind”. I haven’t posted to this blog… I haven’t done my chores… I haven’t done this… I haven’t done that… The string of recriminations is just endless. And it works on my self-esteem, because I’m so deep into my work that I can’t see outside myself and I can’t perceive that I’m really in need of a break.

But I have to remind myself that when I take time off to regroup, I’m not actually “behind.” I’m just taking a breather. So I can return and get back in the saddle again. And I need to cut myself some slack.

So, that’s what I’m working on. Ideally, in the 19 steps above, I would really start around step 17 and plan everything out up front. The problem is, when I’m heavily planned and “project-managed”, I lose a lot of my drive and my motivation. I need to engage my heart and my spirit, not just my head. Getting the two together is a huge challenge. But once I figure it out (I’m still working on it), I suspect the sky will be the limit.