I’ve got another appointment with my neuropsych this afternoon. I think we may be winding up the longstanding assessment period that’s been going on. They have been super-helpful in explaining everything they determined about the state of my brain, and I’m itching to move on the info they’ve given me, to come up with some good strategies for dealing with it all.
I have been seeing another neuropsych for psychotherapy, and it’s been interesting seeing their different take on my situation. They’re very positive and solution-oriented, and unlike my other therapist, who is a straight-ahead counselor — much more touchy-feely and emotions-centric — they’re pretty dispassionate and analytical, versus empathetic. At least, that’s how they seem after a couple of months of seeing them, on and off. I guess we’re still getting to know each other, but this new shrink takes a much more ‘professional’ approach to my situation, addressing logistical issues rather than exploring how I feel about every danged thing.
I have to admit, it’s a bit of a relief. My last shrink was really intent on getting me to get in touch with my feelings. It got a bit annoying at times. I’ve never been an overly emotional person, when it comes to dealing with the outside world. I’d much rather approach things intellectually and analytically, and not worry so much about my childhood woes, as about my present situation. Sure, it’s important for me to understand how my childhood impacted me, but frankly, the fact that I got hit on the head so often when I was young — and the fact that some of those injuries really did impact my development — really makes me think that the standard-issue approach to therapy may not work so well for me.
Oh, hell, who knows?
I’m just glad I’m getting the hang of this work business. It’s taken me over a month, but I’m starting to feel like I have my bearings and I can get my act together. What a relief… I thought it would never happen… Seriously. I was so confused, so disoriented, so turned around, so whacked, so anxious… I just couldn’t think. And I lost myself for a while. I started drowning in all the detail and I couldn’t find anything solid to hold onto, if that makes any sense. It was all this big-ass swirling mass of inundation and confusion and frustration and what-not. Crazy-making. Totally.
But now I’m starting to turn in some results. And now I’m starting to see the dust settle. And I’ve been actually doing pretty well, getting up to speed in the eye of this storm. It really is a storm at work, these days. Nobody knows if there are going to be more layoffs or if folks are going to get relocated to North Carolina or New Mexico or some other state where a facility is being built. Nobody knows if more jobs are going overseas. The person who sits next to me is going to be training offshore workers in a little bit, and they’re not happy about it. They’ve trained offshore workers before, and it always went really, really badly. But the folks in charge are still forging ahead with thier offshoring plans, which has everyone in a state of conflict and dread.
In the midst of this, I’m trying to keep my perspective. And I’m actually starting to do better with it. No more terror about not being able to keep up. No more terror about falling so far behind, I’m hopelessly lost. I focus on one small thing in front of me and do the best I can at that thing. I laser in on that singlemost important issue in front of me at that instant, and I don’t worry about the rest. I keep my notes and track my progress (actually, I’ve been doing better about making lists at the beginning of the day, than recording the details after the fact, which is something I need to change). I constantly watch where I need to improve, and I improve.
And I remind myself that I’m improving. That’s important.
Most important of all, is to have something to show for my work. I’m getting there. Making good progress. Getting there.
So, the bottom line is… I’m doing the best I can under conditions that some might consider challenging, but they’re just how my life is. And I’m doing my best at a company that to all appearances doesn’t give a rat’s ass about me or anyone else who works for them.
I’m not in this business out of the goodness of my own heart (though I do appreciate the opportunity to contribute in an industry that is very important to many people). I’m really in this for myself — for what I can get out of it. I’m in it for the work experience, for the type of work it is, which is so wonderfully invigorating (when I actually have a chance to do it, outside of all those meetings, and when my computer actually works) and is the next stage of my professional development. I’m actually connecting with the work, finding so many ways I can use it — not only at work, but in my own life in the little applications I build for myself on the side. ( I am building a little suite of personal productivity applications, nerdy geek that I am 😉 ) And I’m having fun — when I’m not anguishing about my existential issues.
So, life is good. If I don’t let all the extraneous crap bother me. And if I just keep remembering that where there’s a will, there’s a way… and I can do this. It may take me a bit longer and it might be a bit messier than I like, but I can do this.
Broken Brain - Brilliant Mind 
BB –
Had an interesting chat today with another TBI survivor – this woman is a pretty active advocate and very very knowledgeable, about laws, about TBI, about care and services, etc. I was explaining to her my own frustrations with getting help with certain things, how I felt that I was often talked down to by healthcare providers and that in general folks didn’t ‘get’ what I needed a lot of the time so I felt frustrated and wondering if I was ever going to have a life again. This woman has been through it all – her accident was many many years ago and no one knew doodly squat (not that they know much more) – but what she said to me today was – ‘the reason they can’t give you the help that you need is because they don’t know what to do’. Bingo. The healthcare community – including many tbi folks don’t really know how to help you recover. Even many of the people in the field simply try to rework models for severe injury or stroke and that doesn’t work for mTBI (or even some moderate TBI) – if you are ‘high functioning’ (heavens I dislike that term) people don’t know what to tell you to do – the message is ‘accept your new self’ but what does that mean? and why? I mean sure I don’t hate myself for having slowed processing but it also interferes like heck with my life. Anyway she told me about a site that you might be interested in – the url is http://www.givebackorlando.com/ – read the resources section which has some excellent material on how one REALLY recovers. He does talk a lot about severe tbi and doesn’t address the issues of repeated tbi etc but I think that there are several key points he makes – including that you – the survivor – own your recovery – and that the limits of what you can do are to a large degree up to you.
This woman and I swapped stories about how we sometimes faced really wacky challenges – like when first driving I would get red and green mixed up – but I KNEW that I got them mixed up so I didn’t listen to the radio or talk or eat or answer a phone in the car and every time I saw a light I would say red means stop green means go out loud. I was very careful driving – and in time it became instinctive again. But if I had simply said ‘I can’t do this’ would I have ever recovered that? This woman had a similar issue, or things like getting lost when driving from the grocery to your house – maybe .5 a mile – but you do it over and over and over and over – till you relearn not that patch of earth but the PROCESS for how to do this. Similarly when it comes to problem solving – another of my issues – so I literally developed a process plan for ‘how to solve a problem’ to teach myself. I see you do the same thing on the blog – how to talk to docs or deal with anger or whatever. TBI folks have to re-create these semi-intuitive behaviors and then they have to do them and do them and do them – even when its hard and icky and they don’t want to – because by doing them they eventually create new pathways in their brain to follow, pathways to replace what was damaged. It takes a little time and the older you are the harder it may be – but it’s necessary for mTBI folks to go out and live life – not hide – to experience the difficulty at times – yes, it’s embarrassing and awkward and frustrating and makes you angry – BUT if you don’t do that you will not restore those functions. Period. And that’s the alternative. I can’t say to anyone that they MUST go out there and challenge the world but I do know for myself that I cannot simply ‘accept’.
So a few of take-aways here:
First, we need to be careful about the experts we listen to;
Second we need to make an effort as a collaborative group to use our real knowledge to educate providers and help them develop better approaches and
Third – determine for ourselves what we want our limits to be – Note I didn’t say what we could achieve, I can’t make any predictions but I don’t want anyone telling me what my limits are, I NEED to decide that myself, so I can accept it or not and have the life that is right for me.
Give Back Orlando has some real time tools for recovery – worth checking out – I have to read through a bit more and see how I feel about all of them, but I think his essential point about real life vs. the therapy session room is important. There are also some great quotes in what he wrote – I especially like the the idea that the goal is not to improve eval scores but to have a true quality of life – whatever that means to a person.
The folks who run the program I participate in do some of this, and I know I can be a difficult client – too smart and too stubborn – but I also think they miss a lot, particularly in engaging me in the process. I (and this may just be me) have a hard time with people talking about my ‘deficits’ all the time because it sometimes feels like I am just this broken machine with a lot of patches. The neuropsych who benefited me the most made me figure out what my strategies were (with some help from her) but she also made me feel really capable and strong – not damaged. That was very very helpful for me.
Also I have heard good things about the neurofeedback stuff, wish I had the $$ for it.
M
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Thanks for the info on Give Back Orlando! I took a look at it last night, and became very excited by it. I’ll have to take a closer look — print out some of the materials and cross-post about them here.
It looks (at first blush) like it’s actually a REAL site for people who are serious about getting back on their feet. Not full of “you poor thing…” pity and pandering. Of course, a second look may show something else…
I totally hear you about putting together processes for doing things. It’s so true. I can’t even describe to most regular people all the stuff I have to walk through, just to appear “normal”. Things like figuring out how to not wear the same clothes twice in one week, or how to remember if I’ve shampooed my hair, or how to keep from freaking out when I drop something… or even how to drive regularly, again… so many of these compensatory techniques are subtle and hidden and apply to the most basic and supposedly intuitive actions — like telling the difference between green and red lights. Or figuring out how to have a productive conversation with a medical care provider.
It’s so true! Such a hidden and often confounding process… But for those of us in it, never a dull moment.
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