Last night, two books I ordered arrived in my mailbox. Very, very cool. I went on a “shopping spree” on abebooks.com a couple weeks back, looking for neuropsychological rehabilitation titles (that weren’t over $50 – not an easy task). After combing through listings, I selected a couple. I got both of them for under $25, which makes me incredibly happy.
And they came in the mail yesterday. As it turns out, it’s even better than expected, because they are in good shape, and they are hardcovers. It looks like one of them was a library book, because it’s got the call number taped to its spine and a checkout log inside the back cover. That’s cool. I don’t mind. The book is in good shape, and all the people who checked it out over the years were actually responsible about it.
So, now I have some reading to do. I used to read constantly — always had my nose in a book when I was a kid. My home office is full of books I have bought and read. It’s always been my preferred way to chill out and get my mind off the rest of the world. Plus, I’m always up for learning something new.
But when I got hurt in 2004, I couldn’t read anymore. Not books, anyway. I could read short blurbs, but remembering what I’d read a few pages (or chapters) back, and putting it together with what’s right in front of me… that was out of the question.
Over the years, I’ve pieced it back together again. I’ve read countless technical and scientific papers (most of them having to do with TBI and neurological issues). I’ve read more social media posts than I care to think of. I’ve read a lot of magazine articles online. And of course, there’s the daily deluge of emails that have to be read and responded to.
So, it’s not like I haven’t been able to read anything – just not full-length books.
A few years ago, though, that ability started to return. I had to work at it a bit, and I had to step away from my practice and come back later, many times over. But the practice paid off, and I got it back.
And now I have my books. My nice new books about neuropsychological rehabilitation. Just a little light reading…
If you want to make yourself crazy, this holiday season, try keeping everything in your head.
It will work like a charm.
But if you want to take the pressure off and actually enjoy yourself, making lists of things you need to do, can work wonders.
Making lists has the following advantages:
It stops you from running around like a chicken with your head cut off. It tells you what you need to do next, every step of the way, so you can focus on the steps, instead of trying to remember what’s next. TBI can make it very difficult to focus, especially when tired. If you’re like me, you can end up bouncing around from one thing to the next, and finish the day with nothing much done. That’s anxiety-producing and bugs the crap out of me. A list keeps me on track.
It saves your brain from needing to store everything in reserve. It’s stressful to hold everything in your head, and it’s even more stressful to wonder if you’re going to remember everything you need to. TBI can do a number on your short-term working memory, so if you’re like me, you can forget things in the space of minutes. Sometimes those things are important and shouldn’t be forgotten. We only have so much “cognitive reserve” of thinking power, so using a list to store things instead of your brain can be a big help.
It lets you think things through ahead of time and do a “practice run” of your steps before hand. Visualization and practicing motions in your head has been used by athletes and top performers for many, many years. And it works. When you make a list, you can “step through” everything you need to do, see yourself doing it well, and prepare mentally for what’s ahead of you. TBI can complicate even the simplest things, introducing distractions from your mind and your body, so when I run through my list of things to do in my head, ahead of time, it points me in the right direction early.
It lets you weed out things you don’t really need to do. If you see your list getting really long, you can remove things that aren’t really all that essential, or move them to a different day. This saves your energy for the stuff that’s really critical. TBI can make your head think that everything is important, and compel you to DO IT ALL… or else. Putting things down on paper, lets you see just what matters, and what doesn’t.
It can be very calming. It’s reassuring for me to have a list with me, when I’m going about my errands and chores. I know I’m not alone on my quest to get stuff done — I’ve got a tool to help me through. Just holding the piece of paper in my hands is a welcome sign that I’m doing something smart about my day.
Obviously, not everything can be listed out, and things will probably come up that you didn’t think of. But having a list of the things you do know about can go a long way towards making your life — and your holidays — much more enjoyable.
Over the past few months, I’ve really scaled back my FB activity, the latest adjustment being removing it from my smartphone.
Since my smartphone is work-issued, and I’ll be giving it back in a few more weeks anyway, it seemed like the right thing to do, all across the board.
The only things that really appeal to me on FB are the factual things, or postings from Humans of New York. All the “opinionating” gets on my nerves, the contentious spirit of many posts bothers me, and contrary to some of my friends’ beliefs, I actually don’t need to know how many cats or dogs a local shelter has for adoption.
So, I’m doing without.
One other issue I’ve noticed with FB, is that it seems specially designed to get me worked up over things that have no consequence. People post provocative comments or images, and then I fall for the bait and get hooked into a cycle of outrage over things I have no control over, and which don’t even affect me personally.
What’s the point in that?
There is none, really.
What it costs me, however, is something I really don’t want to lose — and can’t afford to lose — Time. And Peace of Mind. Both of those things are in short supply. So, why would I actively participate in a forum that takes both of them away from me?
Makes no sense.
One of the things that is making this easier for me to do, is improvements in my working memory, thanks to the dual n-back training and juggling I’ve been doing. I’m better able to attend for longer periods of time — I kept a ball in the air for 155 tosses today — up from my best of 135, a week ago. And I’m better able to remember things, so I can read more, digest more, appreciate more.
It’s kind of hard to enjoy reading, if you can’t remember what you read on the last page. It’s a real drag, actually.
But that problem has been clearing up, slowly but surely, as I’ve trained myself.
Facebook actually helped me with that, giving me small and mid-sized pieces of information to digest in a quick way that was entertaining for me — WAS entertaining for me, that is. Nowadays, I don’t appreciate a lot of what I see. I dislike it, actually.
Now I have other options — reading. Finding books at the library and reading them. This is fun for me — at last. For years, it was really distressing and discouraging, so I stopped. That was a huge personal loss to me, because I have always loved to read. Now that I can read again, it’s a whole new world. And I’m incredibly grateful for this new development in my life.
So, thanks for the help Facebook, but you won’t be seeing much of me in the future — except, of course, for the flurry of commotion when I announce that I’ve given notice at work.
So, I had an interesting vacation with my family, last week. I took some time and traveled to visit the folks we hadn’t gotten to see over the holidays, when both my spouse and I were sick and could not travel.
It was an interesting mix – a lot of things got screwed up, but a lot of things went really well.
What went wrong:
I was helping my parents with their gardens. My father asked me to connect the hose to the spigot on the side of the house and join together two lengths of hose, so he could water his new lettuce and beets and onions in the back garden. I managed that, no problem. But when it came time to reconfigure the hose, I got completely confused. He asked me to 1) turn off the water at the spigot, and 2) disconnect the two hoses at the center, so he could attach the one nearest him to his rain barrel in the back. Simple, right? I thought so, too… until I turned off the water and then proceeded to try to unscrew the hose from the spigot. The hose was screwed on tight, and I had to go get a rag to get a tighter grip on the coupling. It wasn’t until I got the coupling off — after many minutes of sweating it out — that I realized that I wasn’t supposed to disconnect that – I was supposed to disconnect the other end of the hose from the second length. As so often happened when I was a kid, my father was futzing around with something or other in the back, impatiently waiting for me to figure things out. Eventually I got it right, but only after getting it wrong the first time — and using up a lot of time doing the wrong thing right.
I lost my prescription sunglasses. I have no idea where they are. Last I remembered, they were in the side compartment in the door of my brother-in-law’s SUV. I called to ask if my in-laws had found them, but no dice. My very expensive prescription sunglasses could be gone for good.
I left the gas on in my in-laws’ house. Anybody could have made the mistake, really, but the fact that it was me, really freaks me out. It’s not the sort of thing I generally do. But I was so tired and out of it… Basically, one of the knobs on the gas stove was broken. My in-laws don’t have a teakettle – they use a coffee maker – and I needed to make a cup of coffee. So, I used the stove and a saucepan with water in it. The first knob I tried turned on, and it was fine. But I couldn’t figure out how to turn it off. There was a steady flame, even when I turned the knob to the “off” position. I finally got it to turn out, and I thought everything was okay. I didn’t smell gas, and neither did my in-laws when they got up later. But then later, we went out… and when we came back, the kitchen smelled like gas, and my brother-in-law had to turn off the knob, which was screwy. For the record, I friggin’ hate gas stoves. And I hate coffee makers. And I hate having to heat water on a stove. Luckily, the house did not blow up when we came in and turned on the lights. I think there was enough of a cross-breeze to ventilate. But still, it’s not a great feeling, to leave the gas on in your hosts’ house.
I couldn’t sleep. I got between 4 and 6 hours a night. It was really rough, and I’m still struggling with my sleep.
Now, for the things that went right:
I got to spend some good time with my folks. Not as much as we’d been hoping to, but still it was something. I got to see their gardens, and I got to just be there with them, even though tensions were high with some health issues that family members have been having. I’ve been hearing all about how terrible things are going, from people who were sharing news. But when I got there, it seemed to me that people were actually handling things pretty well, under the circumstances, so it wasn’t all a catastrophe.
I didn’t lose it over misplacing my prescription sunglasses. I went out and got myself some clip-ons that actually fit my regular glasses really well — and also look better than my prescription ones, which I bought with a whole paycheck, about 23 years ago. As familiar as they had been, and as much as everyone always told me they liked them, it was a pain in the ass to have to have two pairs of glasses on me, at any point in time. I need sunglasses way too much and way too often and under too many different circumstances, to enjoy switching between regular specs and shades, every 15 minutes. This way is much easier. And I also like not having to worry about losing or damaging what I’ve got – if these shades break, I can always get new ones, no problem.
I didn’t lose it over leaving the gas on at my in-laws. True, it’s a pretty embarrassing (not to mention dangerous) situation, but unlike before, this time I did not let it take over my life and turn me into a wreck. In the past, I have gotten completely derailed by things not going right, or screwing something up, and I’ve retreated into my shell to “protect” the rest of the world from me and my screw-ups. This time, I felt like crap for about 6 hours, then I let it go. I apologized profusely, and then got on with just living my life. That, my friends, is progress.
I managed my fatigue pretty well. I laid down and took naps when I could. I took it easy and didn’t push myself too hard. I could really tell just how tired I was (and I can tell I still am), and I acted accordingly. I didn’t just push through for the sake of pushing through. I was flexible. I pulled over and slept, instead of keeping on driving through, when I was so damned exhausted. I hate being that tired, and it has a negative impact on me, but at least I didn’t let it wreck my time.
So, things weren’t perfect – far from it. There was the usual family tension and the usual frustrations. There was the expense of traveling and the time I lost from projects at work. But overall it was a good time, and I’m glad we went. It will take me days to catch up with myself, but catch up I will. I’ve got a good open schedule ahead of me in the coming weeks, and I am honing my approach to my job search and skills building, narrowing all the things I am planning to learn and practice, so I don’t overwhelm myself.
One thing about intense fatigue, it forces me to make choices, to rule things out. When I’m energized and feeling “up”, I tend to take on too much, I don’t pay attention, and then things get screwed up. But when I’m tired, I focus more, I take more time to double-check my work, and ironically things tend to turn out better. I still feel like sh*t, but at least I’m the only one who’s suffering.
A few weeks back, I saw the first half of the movie “Memento” starring Guy Pearce, who has no short-term memory and has to keep writing notes to remind himself of things. It seemed eerily familiar to me, although I wondered about him actually remembering what the notes really meant. I didn’t get a chance to see how the movie ended — it was a bit of a challenge for me to follow. I think it’s one of those things you have to have a good memory to enjoy — keeping track of who did what and all the different pieces of it was pretty challenging for me, and I wasn’t following as well as I wanted to.
The movie was actually pretty difficult work for me, but I stuck with it as long as I could.
Anyway, I had my second round of neuropsych testing yesterday afternoon, and I thought it went pretty well. Then again, that’s what I thought the first time around … we’ll find out. A lot has been going on with me — the uber-boss from hell has given notice and will be gone from the company in another week. Praise be. Now maybe I can actually do my friggin’ job, instead of constantly dealing with their interference, undermining, and trash talking. There is hope, and now I need to do a reset on my attitude about work. Because I realize that a lot of the pain and suffering that this job has held for me, has been due to this uber-boss’es interference… along with the undermining and generally unprofessional demeanor of other coworkers and management types who are not on the same page as me (or the parent company), and who have been pretty poorly behaved over the past two years, if I say so myself.
I could go on, but why waste the time?
Anyway, now is the time when I need to reset my attitude and see if I can rekindle that original excitement I felt at joining the company 2-1/2 years ago. Once upon a time, I really felt like everything was wide open and possible… then the sabotage by my managers started, the bad behavior kicked in, and half my battles turned out to be fighting upper management about he right thing to do. I don’t doubt for a moment that there will be new fights and new struggles with the Overlords in the future, but these will be different ones, and at least I won’t have to fight them on a daily basis right in my own back yard. If anything, the battles I’ll be fighting could bring me closer together with others who are struggling with the same issues — which will be good for individual connections, even if it doesn’t do much for the overall spirit of the place.
The company is changing dramatically from being a mid-sized (under 1,000 employees) to being part of a major multinational corporation (over 10,000 employees), and it’s not going to be easy for a lot of folks. For me, it’s very familiar. I’ve done this a number of times, and I am accustomed to the shenanigans.
So, now is the time to remember my old coping mechanisms and rekindle that old sense of hope I once had, before things became so clear to me.
It’s interesting – in my testing yesterday, I found some things easy and some things difficult. Who can say which ones really WERE easy or difficult for me? I will find out when the testing results come back. I also have a “backlog” of personal and professional issues to discuss with my NP – I can really use their feedback on some things, to get a reality check. It’s interesting that out of all my friends and family, they seem to have the only truly independent view of the things I tell them, without an agenda other than helping me think through things logically and with common sense. They also recognize the neurological issues that get in my way, so while others fan my indignation into hot, raging flames, they talk me back from that edge and get me using the more sensible parts of my brain to work through it all.
Now, I just need to remember what to discuss with them.
Which is what I’m doing this weekend. I have made a list of the things I’m dealing with these days. I just started the list, and there are 12 “biggies” right off the bat that come to mind. That’s not even the little everyday crap that is getting to me, like my not being able to complete tasks on time, and my failure to follow through on important things at work. I am thinking that once management changes, and I am out from under the uber-boss’es sabotaging influence, things will loosen up for me a bit. I have a good rapport with the “overlords” thus far, and I think we’re going to continue to work well together. I have a lot of great “street cred” in other parts of the company, so there are a lot of people on my side, which is always good.
But good or not, it’s still additional stress. It’s still additional energy I have to put into things. And the additional things are personal as well as professional. I need to really focus in on keeping rested and taking good care of myself. I haven’t done such a great job of that, in the past months — I’m sure at least in part because of all the stresses at work, and wondering if there is really any future for me, under the current regime. Well, news flash – the current regime is going away, and it’s being replaced by something else. And in the end, sticking things out and letting the chips fall as they will, is probably the best strategy I could have in a situation like this.
Sticking things out, having endurance. And of course getting good rest, eating right, and getting good exercise as well.
It all fits together. I still pretty much hate my commute. I still don’t see a long-term future at this job. And who knows if the new boss will be any better than the old boss? … I hear that “Who” song playing in the background… “meet the new boss… same as the old boss…”
But at the very least, I’ll get some relief from that uber-boss who is disrespectful, obnoxious, cryptic, and always has to be the smartest person in the room… or else.
“Memory, attention deficits, and speed of processing information have been identified as some of the longer lasting and more pervasive neuropsychological symptoms seen in head injured adults (Kay et al., 1994; Telzrow, 1990),” and ” Deficits in higher cognitive functions can occur in the face of relatively normal performance on other more basic tasks (Cullum et al., 1990), explaining the improvement in intelligence tests scores without a comparable improvement in function. Wood (1987) showed that attention, which is often impaired by MTBI, is more important than intelligence (measured by IQ) during the learning of a simple discrimination task, and suggests that attention permeates all aspects of behavior. This helps to clarify why functional deficits continue in the face of intellectual recovery. Deficits in attention are particularly serious because there is little evidence for success of attention training procedures (Bigler, 1990).”
That last sentence caught my eye: Deficits in attention are particularly serious because there is little evidence for success of attention training procedures. Really… That’s a downer. Especially because my attentional issues became abundantly clear during my neuropsych testing… and thinking back over my life, attention (or lack thereof) has been a major contributing factor to the difficulties I’ve had.
If there is little evidence for success of attention training procedures, what does that mean?
Well, personally, I have to wonder about
A) the type of evidence they’re talking about and when/where did they look for it?
B) what their measure of success is?
C) what attention training procedures they were using?
It seems to me that the lack of evidence is more about the lack of attention they’re paying to… attention. The attention deficits seem to be on the clinical side, as well as the TBI side. And the possibility that people aren’t measuring this on a regular basis under special scientific conditions that give the results scientific credibility, means that this sentence is instantly suspect.
What’s more, who can say what attention training procedures were being used? Seems to me, there’s more than one way to train your attention, and the best ways may be 100% incompatible with a clinical setting or an environment set up to gather data.
So, I really can’t worry too much about this statement, which dates back to 1990, as well. A lot can change in 21 years. So, this may just be old information.
But anyway, back to the idea of exercising your attention and making it stronger — practicing attention exercises after mTBI, with the intention of improving your ability to sustain focus and attend to what’s in front of you. I truly believe — and we have found more and more evidence in the past years — that the brain can and does rewire itself, and neurons that fire together wire together. What it takes is intention and determination and consistency. Truly, consistency may be the biggest element in all of this. For no matter how good your intentions and no matter how determined you are, if you’re not consistent in what you do, you’re going to have a harder time making progress, than if you stay on track and on target throughout the weeks and months, even years.
It’s worth it, however. Well worth it. I have to say that in the past three years, my ability to attend to things has dramatically improved. That improvement started with first learning that I had deficits and I needed to take action. It really commenced in earnest when I decided that no matter where I was at the moment or how I felt, I was going to change this for the better. I wasn’t going to settle for “what is” and “what isn’t” — I was going to dwell in the land of “what isn’t — yet”…and “what will be”. I can’t say that I achieved every one of my goals I had in mind. I’m still not quite where I’d like to be with my short-term memory, and I may not ever get exactly back where I used to be. But then again, I might be able to find ways to be even better at the short-term remembering thing, using other tools than I had before, when I was wholly dependent on my memory alone.
I’ve known a number of people over the years who have informed me that they had attentional problems, and that’s just how they were. They resigned themselves to being less than they could have been — and I am quite certain they could have improved their performance, had they simply applied themselves. But they decided, years ago, that they were how they were, and that was that. No room for growth. No room for expansion. No room for change. Sad. 😦
The thing is, they basically disabled themselves. They spent a whole lot of time feeling bad about themselves and telling themselves that they sucked at what they did, etc. etc. And they just didn’t try harder. They didn’t change how they did things. They didn’t extend themselves. They didn’t suspend judgment about themselves. They just decided that they were how they were, and that was the hand they’d been dealt in life.
And they lived these half lives filled with anger and frustration and defeat.
What a waste.
I tried encouraging them to try different things, to do things in different ways, but they just wouldn’t. They’d made up their minds. Perhaps because the people they turned to for guidance had not seen enough clinical data that demonstrated that attentional issues can be resolved through practice and deliberate action.
See, this is one of the things that gets me about all this scientific information — it’s subject to change. And it’s open to interpretation. And so many times, there is no follow up over the years that shows that their original assumptions did not pan out over time. And people like me, who have a thirst for knowledge and a trust in experts, see them saying things like, “There’s no recovery for people with mTBI — they may improve, but they can never recover,” and they give up. Because some expert somewhere decided something, based on their own limited information and experience.
Let me say this — TBI cannot and should not define you. You may have been hurt, you may have gotten injured. You may have a rough time for a while, and it may be rocky going, finding your footing again. You may end up with “souvenirs” of your injury that follow you the rest of your life. But that doesn’t mean the story is over for you. It doesn’t mean that’s all there is, and the proverbial fat lady has sang.
Oh, no. See, experiencing a brain injury is like moving to a different locale. There are some things you have to leave behind, because they no longer serve you. If you move from Sweden to Miami, chances are, you’re not going to need your heavy winter clothing, and you won’t have to concern yourself with limited sunlight during the winter. But that doesn’t make Miami any less good than Sweden. It also doesn’t make it any better. It just makes it different. For me, my series of injuries have chipped away at my working memory, until I sometimes can’t remember stuff that gets said to me, 15 minutes after someone says it. I can’t remember unfamiliar number sequences longer than 4 digits. But I can sure as hell write stuff down, and I have ways of making a note of the information I know I’ll need to use later. I may not have as much of certain abilities as I did before, but I have plenty of others to fill in those gaps – and in some cases, the new ways of doing things may be even better than the old ones were.
This is not to make light of TBI. It’s disruptive. It destroys lives. It seriously messes with your sense of who you are. But what if recovery from TBI were about recovering a quality of life – the sense of it, the experience of it – rather than the specifics? And what if we actually were able to restore what we’d once lost, through hard work, effort, determination, and consistency? What if that were the case?
Well, I’ve gotta run. I’m at the public library, and I’m parked four blocks away from my car, which has another 20 minutes on the parking meter, by my calculations. I’d like to have a leisurely walk back, then get on with my day.
Well, I’ve had a very eventful 24 hours or so. Last night I stayed up later than I should have, and I decided to take a long, hot shower before I went to bed. Odd thing was, the water wouldn’t get very warm, and needless to say, the shower was neither long, nor hot. At the same time, I heard my spouse calling that the heat wouldn’t turn on. Last night was a chilly one, and just when we thought we were in the clear, sure enough, we needed to turn the heat on a little.
Not to be. Turns out, we ran out of oil. Bummer. The tank was empty. M-T. And when I called the heating oil folks (they have a 24-hour line), they kinda bitched me out for not paying in full on time. They said they’d send someone over, but not till morning.
It’s true. I have done a piss-poor job of keeping on top of paying the people who help me heat my house. Mostly because I’ve been very low on funds all winter, and I haven’t had enough money on hand at any one time make a decent payment. Until recently. My employer paid out our bonuses a month late, so we were waiting around for that…
Anyway, the real issue was not just the late payments. The real issue was that I hadn’t communicated with them about my situation. I had a little talk with the service guy this morning about it – he said that plenty of folks are in my same situation, and that the oil company can work with me, if need be. But I do need to communicate with them.
This is an area where I am really working hard, these days, and I’ve come an amazingly long way, in the past three years. Time was, I really didn’t discuss anything with anyone. Not my friends, not my family, not my co-workers. I just kept my head down and worked. Or pretended I knew what people were talking about and faked my way through everything. And when in doubt, I did nothing. I never asked anyone for clarification, I never engaged anyone in back-and-forth communication. I either just acted like I knew what was going on, or I pretended nothing was going on at all.
Why? Because I felt stupid. Because I felt dense and inept and I had a hard time following conversations. It’s tough to keep a conversation going, when your short-term working memory is for shit, and you never stop in mid-dialogue to make sure you know what the hell is going on.
But I never stopped to ask for clarification, and I never let on that I was confused or had gotten turned around. It was just too much for my pride to take. And all the while that I was acting like I had it together, I was struggling and beating myself up for not knowing what was going on.
This is changing. Big-time. I can even remember the first time I asked anyone to clarify what they were saying to me. It was my neuropsych — about 2 years ago. And the first time I ever stopped someone to ask them to clarify what they were saying, it was terrifying for me. A milestone. Because my neuropsych didn’t call me an idiot or treat me like I was stupid. They just clarified, and the conversation moved on.
It’s pretty amazing how that works. And it’s pretty amazing that I even took that first step. Admit that I didn’t know what was going on? Not me! Ask for help in understanding what someone was saying to me? Never! But that day, things changed.
Now they have to change again. I need to start talking to people and ask them for help when I’m in a jam. I realize that I just didn’t trust myself to discuss my situation. I kept waiting for it to change, hoping it would change. But time got away from me. And I realize that what I really need to do is trust others to be willing to work with me — and not expect that they’re going to rip me a new one, if I fall short.
I wrote a check for the oil and gave it to the service guy. Then, later, I called the oil company and told them I’d done it. They were so nice to me…
I read something really useful the other day over at Give Back LA — the reminder that I absolutely need to write things down, or I run the very real risk of forgetting them.
I must admit, I have gotten away from doing this, over the past months. For some reason, I seem to think I can use other compensatory techniques to keep in mind what is important. And to some extent it works. But that’s a load of crap.
If I don’t write it down, I might as well wave good-bye, because there’s no guarantee that it’s coming back.
My memory, to be truthful, tends to be highly unreliable. As an example — which keeps happening to me — I have two sets of three digits of a conference call code that I need to key in, to join the conference call. I think I can remember both sets of three, but after punching in the first set of three digits, I’ll be danged if I can remember the second three. Sometimes I can remember 1 of the 3 digits. Sometimes 2 of the 3. But remembering all 3? It often doesn’t happen.
I think it will. I hope it will. I expect it to. But it doesn’t happen.
Anytime I start to think that all my issues are over and done with, I need only try to recall short sequences of numbers and/or letters (like library book numbers) for more than 15 seconds, and I’m reminded all over again that I have to keep up the effort to not have things fall apart. I need to keep up the effort to keep things in order in my life, from the bills that come in that need to get paid — but don’t, when I put them in a pile with all my junk mail and the disappear from sight, and I forget all about them, till the late notices (and fees) start rolling in. I need to stay honest about what I can and cannot retain, and not over-estimate my capacity for stuff that stays in my head.
It’s all too easy for me to think, “Oh, that’s not a very large piece of information – I’ll surely remember it!” Then I find out that it might be small, but it’s all but disappeared from my memory. I’m lucky if I even remember that I’ve forgotten about it.
Fortunately, this problem is relatively easy to fix — just write stuff down.
The problems start happening when I start writing EVERYTHING down, in such exquisite and exhaustive detail that I become overwhelmed by the amount of info that’s there. The more nervous I am, the more caught up I tend to get in details, so writing things down and being worried that I won’t remember them just makes things worse.
The best thing I can do is just trust the fact that I’m writing things down, and leave it at that.
If I forget a piece of it, oh well. It’s not like I don’t know how to do damage control on things I’ve completely forgotten.
I’ve just “re-discovered” Give Back, Inc., the organization/group that helps traumatic brain injury survivors get their lives back with self-therapy.
Their mission says:
GiveBack, Inc. is a recovery group for traumatic brain injury (TBI). Its purpose is not to help survivors to accept new lives that offer them limited options, but rather to help recoverers to deal with their deficits, improve their functioning, become active, and regain self-control of their lives.
I originally encountered them as Give Back Orlando, but the website has since disappeared, and it seems they’ve moved their operations to LA, as well as online. There is a Traumatic Brain Injury Support Group online that features regular postings from Dr. Larry Schutz, the founding director of this great organization.
I’ve been reading some of the articles about TBI and recovery and the different systems available to people. What I really respect about what I see, is that it’s based on many years of experience — both good and bad — and there’s still a perspective and a commitment to rehab and recovery, despite all the roadblocks in the way.
It’s safe to say that I would not be nearly as well-off as I am today, had I not come across Give Back. There was just the right amount of information for me, about just the right subjects, and I had room to move and develop my own self-therapy program based largely on what they outlined and suggested. And the changes to their suggested approach which I made to the recovery program I’ve been on didn’t negate the good their approaches offered. Obviously, everyone is different, and some of the suggestions just sounded hair-brained to me. But overall, the advice was sound, and I was under no obligation to do things exactly the way they said I should.
I’m really glad I came back to Give Back. Going along in my everyday life, it’s easy to forget about the things I need to do, to stay functional. And with the successes I’ve had, it’s easy (and tempting) to dismiss my difficulties and downplay them, thinking, “Well, I’m glad that’s over!”
But it’s not over. Brain injury is never over. The attention issues, the short-term memory issues, the fatigue and physical issues, as well as the processing speed issues may be mitigated by my coping mechanisms and compensatory techniques, but they aren’t going away. And if I don’t stay vigilant with them, they can rear their ugly heads and make my life a lot more “interesting” than need be.
The fact of the matter is, I have developed a lot of ways to deal with my issues. But if I don’t use them, I can get into trouble real quick.
So, I need to keep it green. I need to remember how close to the edge I was, when I first embarked on my recovery. I also need to remember that there ARE areas where I still have issues, and while my coping mechanisms may be great in most cases, they are not always second-nature, and I really have to work at them. I have to remember to do them.
And I have to keep in mind that when it comes to TBI, I may be a whole lot more functional now than I was three years ago, but I can easily go back to being non-functional with almost no effort at all. All I need to do is stop interacting with people when they talk to me, tell myself that I understand everything I think I do and not double-check, never write anything down, expect to keep everything in my head, and eat crappy food, drink too much coffee and soda, and stay up till all hours snacking and surfing the channels. I could also quit exercising each morning and stop paying attention to what’s going on around me. That’s a great way to go back to the way things were.
But if I keep my wits about me, stay mindful and pay attention to what’s going on, eat right and exercise each day, and I interact with the world and ask plenty of questions so I’m sure that I’m clear (even if I do feel like it makes me look stupid), I can stay on track. I just need to remember to do it.
And that’s where Give Back helps. Not only because of the forums they have there and the self-therapy materials they offer, but also because of the articles by Larry Schutz (I’ve been a fan of his work for some time, and that hasn’t changed). It’s so important for me to remind myself of where I come from, what I’m dealing with, and where I can end up, if I’m not careful.
I may move past the basic problems, and I may have my coping mechanisms in place, but if I don’t stay vigilant and keep up the level of effort required, I could end up like so many other TBI survivors — doing well initially, then slipping into long-term disability that I can never seem to shake loose.
Something unusual has happened to me, over the course of the past six months or so — I have essentially abandoned my long-standing list-making habit. But at the same time, I’m able to get the same amount of things done — if not more.
This is a huge departure for me. For years, I’ve been totally dependent on my lists for getting things done. If I didn’t have it written down, it wouldn’t get done. I had lists for everything — all my different projects, all my different commitments, all my different hopes and dreams and plans. I mean, seriously — I had notebooks full of highly detailed lists of what HAD to get done. And almost each and every day, for years on end, I took voluminous notes on how my day had gone, what had worked, what didn’t, and why. Just thinking about it now makes my head spin. But that’s where I was, so…
Many of the “important” projects were pure busy-work (as I’ve discussed before), intended mainly to distract me from the existential angst of not knowing what the hell was wrong with me. And many of the plans I had were not only unrealistic, but downright delusional — derived more from having seen other people do those things, feeling a great deal of respect and admiration for them doing it, seeing how well-regarded they were (by others) because they were doing those things… A lot of my motivation came from thinking it would be cool if I did those things too, so I could gain the respect and admiration of others, as well as myself. Those kinds of goals stemmed more from a need to feel valued and useful, than from any inner need to actually do those things.
Looking back, it’s amazing to me, how many “dreams” I had that were little more than bids for the respect and regard of others — and myself. And I’m even more amazed that I was under the serious impression that I could do that stuff — like provide legal counsel to people, or high-level advisory services. Truly, I was living in my own private Idaho, without much grip on reality.
But that’s neither here nor there, at this time. Right now, what matters is that I’ve got a grip, now. I have a clue about my professional limits. I’ve also cut out a ton of those old pet projects, and I’m focused more clearly than ever on the things that I can do, and I want to do, because I (not somebody else) want to do them.
Interestingly, I’m finding that my old list-keeping habits get in the way more than they help me now. Once upon a time, I couldn’t survive without a notebook filled with tons of to-do items. Now, it’s rare that I even consult my daily minder. (Note to self: make sure you check your schedule when you need to — you still need to keep your commitments.)
I have to say, this freshly list-less life is quite freeing. And in fact, when I make lists, nowadays, it really turns me off. When I rely on lists for getting things done, ironically, I often forget the things I’m supposed to be doing. Fascinating. How did this happen?
I think there are several different factors coming into play:
I don’t have as much crap packed into my life that I “have” to do. I’ve cut out a truckload of extraneous “goals” that serve no useful purpose, other than to make me feel like I’m being productive.
I need a more thorough way to remember things and get them done, than a written list. Using a list makes it possible for me to not think about my life that much — just focus in and get single things done at separate times. That was fine, when my life was in a shambles and I had a terrible time keeping anything at all straight in my head. My most basic need was to get things done, regardless of the reason behind it or the context in my life. But now I need more texture. I need more background information. I need more “reason” to do things, or I find myself just not doing them. A list can’t do the “reason” trick for me.
I’m way more active than I used to be, and because of this, I dislike being tied to a piece of paper or an organizer of some kind to get me through the day. I like to move and think and be, not consult my checklist.
I use my work computer a lot more for keeping track of what I’m supposed to be doing. Okay, technically, keeping track of things on my computer is like keeping a list, but the lists I keep are a lot less detailed than they used to be. I mean, I used to break down every single little thing I did into a gazillion sub-tasks. It was mind-numbing. And pointless. Once upon a time, it made me feel better. No more.
I have started turning to people for help a whole lot more than I used to. Now that I’m able to communicate with people and ask them for clarification while we’re talking (instead of walking away pretending I know what they were talking about), I can actually discuss things that need to be done. I’m not locked away inside my head anymore, and I have a lot of people around me to contribute to my context and my grasp of the things I need to get done.
Now, when I talk about context, what I mean is, the grand scheme of things. It used to be, I had a list of things I was going to get done, and each of them were separate and distinct from all others. And I would get so much granularity going on so many different tasks, I would lose sight of the big picture, lose my place, and ultimately not get very much done.
But with context — understanding what it is I want to accomplish, and why… having a vision of the kind of life I want to create for myself… and having greater understanding about the things around me which help or hinder me — not only can I remember what I’m up to a whole lot better, but I can also interact with the world around me on a scale that escaped me for most of my life. It feels strange, to be at this place now, after spending four decades in the dark, but hey, at least I’m coming out in to the light…
I must admit, it’s kind of hard to believe I am at this place, right now. For so many years, I considered it a strength that I was so “well-prepared” but in fact, I was just holding myself back and missing out on a whole lot of interesting detail that I didn’t capture in my lists.
I also didn’t have a handle on the real “why” of what I was doing. I never developed the real and lasting habit of listening to myself and understanding what I wanted to do… and why. That’s probably because, given the constant difficulties I had, and the perception that I had of myself as a blithering idiot who had nothing to offer that was my own, I never got in the habit of thinking that I even mattered. Or that I could ever truly achieve anything I put my mind to. After all, too many things got screwed up when I tried them. I got turned around too many times. I got my hand smacked — literally and figuratively — over every little thing. Why in heaven’s name would I even dare to guess that I mattered, or that I could contribute something real, something of value, to the world around me? I was so out of touch with myself, so prone to screwing up the things that I undertook for my own sake, that I fell into the habit of disregarding my own ideas and wishes and stuck with following others’ orders — that was my ticket to success. And it served me pretty well, all things considered.
But it’s left me with a huge gaping hole — a hole I filled with list after list of to-do items.
Now, if you don’t listen to yourself, and you don’t understand really why you are doing things, a list of tasks to do makes perfect sense. You have this outside prop that helps you “git ‘er done” and you can end up being all efficient and whatnot. It makes you look good. And it plays well with the project managers of the world. But it can result in a somewhat meaningless existence that consists solely of satisfying others’ requirements, not getting on with the life you’re most apt to live. And if you’re like me — waking up to find yourself acquiring the ability to pay attention to yourself and get out from under the dark cloud of self-doubt and insecurity — that old way, as outwardly rewarding as it may be, is no way to live.
So, I’m changing that. I’m living my life without lists. It doesn’t always work out perfectly, as my memory is still quite spotty in many places. But it’s a hell of a lot more fun than being shackled to a never-ending series of tasks… many of which were never my idea, to begin with.
It wasn’t that long ago that I couldn’t function without a list — and the practice of writing everything down once served me pretty well in some respects. But now my brain is working differently from how it was before. Heck, my whole life is working differently than it was before. I’m better able to conceptualize the whole of my life, than I was even two years ago, and that means I have to get rid of my lists.
So long as I understand where — eventually — I am going, and why, I can get there. Without writing every last little thing down.