I finished reading a book

Here’s a blast from the past. About a year ago, I wrote this post (but forgot to publish it), absolutely giddy about having finished reading a book. Looking at where I’m at now, it’s pretty amazing the changes I’ve been through. After not having been able to get through an entire book in years (although one of my favorite pastimes was always reading), last November, I actually finished reading a book.

Here’s the post:

November, 2009

Yesterday afternoon at about 3:30 p.m., I finished reading Aging with Grace, the book about the Nun Study of those long-lived School Sisters of Notre Dame, which explores how and why some people live long and never succumb to Alzheimer’s or dementia, and why others may be more vulnerable. This book has a lot of meaning to me, because as a multiple TBI survivor, I’m statistically more vulnerable to dementia, and about the last thing I want, is to be incapacitated and demented later in life. No thanks…

I found a number of tips and clues about what you can do to avoid dementia — even if you do have some brain degeneration — and I read reports of nuns who had all the signs of advanced Alzheimer’s, but no symptoms whatsoever before they died. Sounds good to me.

I’m invigorated by this new information. I highly recommend it to anyone. And I’m even more invigorated by the fact that I actually finished the book! It took me a month to read all 219 pages, but I did it!!!

This would not be big news for most people I know. Most people I know read books as a matter of course, and when they start a book, they generally finish it (unless it’s truly awful and/or they run out of time). I, on the other hand, have not finished reading a book I started in a number of years. It’s hard for me to remember the last time I actually reached the last page of a book I started.

Let me walk around my study, looking for a book I know I’ve read cover to cover… Let’s see… I am reasonably certain I’ve read about 56 of the books in my study, which constitute maybe 10% of the total on my bookshelves. And the  most recent one I finished prior to Aging with Grace was consumed in a hurry back in 2006. I may have read something from cover to cover in 2007, but I cannot recall.

Now, mind you, I have tons of books, but most of them I’ve only read the first couple of chapters, if that. It’s a lifelong habit that goes way back to when I was a kid, and I never even really realized it was a problem, until this past year or so, when I started to take a long, hard look at my reading habits — or lack thereof — in the context of my TBIs.

It’s a complicated issue — part difficulty with the material, part difficulty with keeping focused on the material. I can be really distractable, so I often end up wandering off on cognitive tangents, when I’m reading. But part of what feeds my distractability, I think, is the fatigue that sets in after I’ve been reading for a while, as well as the discouragement I feel when I realize my eyes have been skimming pages for the last half hour, and I cannot remember what I just read. It’s complicated. And it sucks. And it never occurred to me before that I might have difficulty reading. I’m such an avid infovore — I’m usually reading something. Who would guess that reading is such a challenge for me?

It’s taken some adjusting to get used to this fact. And the adjustment has been as much of a hit to my self-image as anything else. I was always known as a bookworm. Much of my knowledge comes from books. If I’ve been reading at substandard level all these years without knowing it… and also not grasping a lot of what I was reading… what does that say about me, as a person? Does it completely invalidate many of the beliefs and assertions I’ve had about myself, for over 4 decades? It’s troubling to think so.

But now that I know reading is a problem for me, I can take steps to do something about it.  And that’s good. I literally cannot live this way, not being able to read a book from cover to cover. I am NOT going to continue in life this way. Something must be done. I need a plan. Here’s my plan — which so far has worked well, the first time through.

I need to acclimate myself to reading for longer periods of time, by reading for fun and pleasure, getting up to speed with that, and then starting to read for learning and understanding. I need to practice regularly and build up my stamina, and also develop different strategies for how to handle the material I absorb.

First, for the fun reading, I need to identify a topic that interests me which will stimulate me. I need to have some investment in the material, some payoff, some reward that comes with it. Preferably, I need to find something to read that also has “companion” material, like a movie that was made of it. I need to have the information presented in different formats, that different parts of my brain can “hook into”.

I chose The Bourne Identity, because it’s an action adventure novel that’s broken into relatively short chapters. It’s also got a movie made of it that is one of my favorites, and I have visuals of the action to prompt me as I read along

Second, I need to set aside time to read. I have to have time to do it, when I have time to rest either before or afterwards, or both.

I do this on the weekends. I take naps on the weekends to catch up with my rest. And I read during the afternoons.

Third, I need to gradually increase the amount of time I spend reading. I pay attention to how much time I’m spending, how I’m feeling, how my pace is. And I really congratulate myself, when I’ve read more than 10 pages at a sitting and understood what was being said the whole way through.

I can do this, but I also need to make sure I’m not tiring myself out. I need to make special efforts to reward and praise myself for having read as long as I have. I tend to get down on myself and think I’m stupid, when I’m not reading well, and I assume that it should be easy for me. But my reading has never been as strong as I always thought, and since my fall in 2004, it’s got even worse.

Fourth, I will then transfer my stamina and interest and good experiences with action/adventure fiction to my other non-fiction reading. And I must pace myself, gradually working my way up, again, and re-reading the things that I didn’t get the first time around. I need to keep an action/adventure book on hand, to keep my interest bolstered. I don’t worry so much about finishing the fiction in a timely manner. It’s more for the sake of keeping my spirits up and having a good experience while reading, so I can focus my more intent energies on the non-fiction/professional reading.

This is what I’ve been doing, on and off, with Aging With Grace over the past month. And now that I’ve done it and see that it works(!) I am ready to move on to my professional reading.

This is such important work. My survival and success depends on it. I’ve got a bunch of books I bought in the past that I need to read for work, but I haven’t been able to crack them. Now, I’ve got to do it.  Now I have a strategy and a plan, and I’ve proved (at least once) that it works. Reading really is fundamental. And the fact that I have done it with Aging With Grace has really lit a fire under me.

But before I go any further, it’s time for my Sunday afternoon nap.

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Telling stories

I’ve been coming across a lot of references people are making to telling stories… what stories we tell ourselves, what stories others tell us… what stories we want our lives to embody.

Once upon a time, I was big into stories. I wrote constantly, and much of what I wrote was stories — fiction, non-fiction… just accounts that were meaningful to me. Sometimes others found them meaningful — when I showed them to others. Most of the time, I kept them to myself. They were my stories, and I didn’t want  anyone else meddling in them.

I continue to write, but now I share my stories. I do a whole lot more writing online, than in my onetime journals, and it’s good. It’s a good development. Looking  back at all my past journals, I’m amazed at how circular I was — rehashing the same topics over and over and over and over and… well, you get the point.

I have that problem a lot less, now that I’m putting what I write out in public.

Keeps me honest.

It’s good for me.

And I’ve been thinking it might be good for me to do more of this writing — along different lines. I’ve written books before, and it’s strangely easy for me to collect several hundred pages of words that hang together well. I’ve written under pseudonyms, to keep my writing identity safe and sound, and the material I’ve written has gotten good reviews from some. And I think it might be time for me to write about growing up with TBI. I’ve been looking around some, and it doesn’t appear that there’s much literature out there about kids with head injuries — especially from the point of view of the child.

The books that I have come across about kids with TBI have been either non-fiction (I did find a really good one, the other week), or they’re biographical accounts/personal stories from the point of view of parents. Not much — that I’ve found — has been written by people who grew up with TBI.

Could be, people just want to put it all behind them and forget about it. I could see that. I feel that way, myself, sometimes. But then I think about all the parents and the kids out there who have experienced TBI — especially concussions in sports, which is so common — and I think, “Maybe this is something I need to NOT put behind me. Maybe it’s something I need to put out there in front of me.”

I’ve been feeling incredibly emotional, lately. My life is undergoing some significant changes, with my home life shifting and taking on new aspects of independence for both my spouse and me, and my job not being the most wonderful experience in the world. I’ve been waking up regularly at 3 a.m., with this nagging sense that I need to make some changes… just what those changes are, exactly, I’m not sure.

I know what I would like to do — have a lot more freedom to move and breathe and travel and enjoy my life (I haven’t had a real vacation in quite some time). I would really like to devote more of my time to this work of educating folks about TBI, writing about my life, informing people of the important details, helping survivors better understand themselves and manage their issues, and reassuring worried parents and spouses and friends that things don’t have to end badly. There is hope.

Yes, I know what I would like to do. I’m just not certain how to get there.

But writing this book will be a start. Yes, I think I’ll start here.

Daily planning tools to keep on track

It’s no secret I’m really into regularly tracking my activities and progress. I find that the more I track my progress, and the closer tabs I keep on how I’m messing up (and what I can do about it), the better I function and the better I feel about myself.  You can read how I use the system at this post.

I’ve made a new version of the form I fill out each day, for others to use. You can download it here for free: Daily Planning and Results Log Book Blank (Word document format).

Log Book View

Log Book Page 1

Log Book Page 3

Log Book Page 4

This log lets you record what you have planned to do each day at a certain time, as well as what you actually did (I tend to “wander off” and not get things done, so I need to track what I actually did instead, so I can see what motivates me to take action throughout my day). It also has a few pages for “360 feedback” notes, which are all about what you did right during the day and why… as well as what you could have done better, why that was, and what you can do different next time.

It’s based in part on the Give Back materials, which include daily planners as well as head injured moment assessments. But it’s also modified based on what I’ve learned works well for me. Give Back tends to limit the number and kinds of explanations for why things turned out like they did. Their reason lists are also a bit of a jumble with not much organization. Plus, I find that having a whole big form to fill out to explain why I screwed up, causes me to spend more time thinking about stuff, than actually doing it — with me, it leads to “analysis paralysis” — but it might not be that way for everyone. Some people, I’m sure, really benefit from extended examination of their issues.

But I tend to get so busy during my days, that I just don’t have the time for extensive analysis of my head injured moments (even though I tend to have more than a few in the course of each day). I find it most effective to keep things simple and flexible, and focus on how I get through my day… and how I can do  better the next time, if I need to refine my approaches.

I’m also creating a version of this log that is book-length and spiral bound. It’s very simple and straightforward — just a bound copy of about a month’s worth of forms, to make it easier to keep organized. I’m presently creating it on Lulu.com and it will be available shortly for folks who want to buy a copy of the book that collects everything in one place.

I tend to keep all my forms clipped together in a stack, which isn’t the neatest way to do things. But that’s just me. I will probably order my own spiral bound copy, in any case, because the printing is going to be nicer than my own printer, and it won’t smear when I mark it all up with my highlighters. Also, having it all in one place — what a concept!

Just so you know, there the book-length workbook will cost money to buy. But there’s no obligation to purchase anything. Honestly, we pay enough as head injury survivors, in terms of daily difficulties. Why add to the burden? The  book-length version is just a neater and more orderly print alternative to the 4-page version (which is a free download).

For the download, you can grab the Word document and then print it out and fill it in by hand or you can put it on your computer and type in the information. Either way — whatever works best for you. I tend to handwrite all my notes, because I’m not always at a computer, and I don’t want my recovery to be dependent on technology. Plus, I like to color-code my info, so it’s easier to decipher later (that’s sometimes a challenge).

Oh, if you don’t have Microsoft Word on your computer, you can download a copy of OpenOffice (www.openoffice.org) for free — it has all the applications you find in MS Office — word, powerpoint, spreadsheet, even database. But it’s Free. As in — costs you no money at all.

Me? I’m big into free. So, if you want to use this log, and you need a word processing program that rocks, check out Open Office.

Well, must run – the day is waiting.

Doing it differently this holiday season

I did something quite unusual last night — I went Christmas shopping by myself at a much slower pace than usual. I didn’t manage to buy everything I set out to, but I got everything I could, and I got through the experience in one coherent piece — and I was able to get my nap after I got back.

Normally, this time of year is marked by team-shopping with my spouse. They contact everyone in the family and find out what people want… or we talk about what we think people want, and then they make up the list. We take the list, hop in the car, and head out to stores that look like good candidates, then we slog through the process of elimination, muddling our way through… with me getting so fried I either completely shut down and become non-communicative, or I melt down and fly off the handle over every little thing.

We usually spend several evenings like this, ’round about this time of year, and we’ve both come to dread it a little. My meltdowns had become more extreme over the past few years, and this year we were both really dreading the whole Christmas shopping business — to the point where we are going to be late(!) with presents for family members in other states. That’s never happened before. We were always good about it. But my meltdowns screwed everything up.

We both recognize that doing a lot of social things, this time of year (when work is actually getting more crazy, what with year-end and all), takes a huge toll on me. Even if it’s with friends (especially with friends), all the activity, all the interaction, all the excitement, really cuts into my available energy reserves. And then I get turned around and anxious… and I either regress to a cranky 9-year-old state, whining and bitching and slamming things around… or I melt down, start yelling, freak out over every little thing, and start picking at my spouse over things they say and do, to the point where neither of us can move without me losing it.

What a pain in the ass it is. Of all things, the uncontrollable weeping bothers me the most. The yelling bothers my spouse. It’s embarrassing for me and frightening for them, and neither of us has a very Merry Christmas, when all is said and done.

So, this year we did things differently.

We split up for the day and took care of our respective activities.

My spouse went to a holiday party that was thrown by a colleague of theirs who’s married to an attorney who deals with financial matters. I was invited, too, but we both realized that it would be pretty dumb for me to try to wade into the midst of 50+ actuaries and tax attorneys and their spouses who were invited to the shindig… and try to hold my own. Certainly, I can keep up with the best of them, but marinating in such a heady soup, especially with everyone hopped up on holiday cheer (eggnog, red wine, punch, etc.) and all animated and such, would have been a recipe for disaster.

So, I didn’t go. Instead, I took our shopping list and headed to the mall to stock up on what our families had requested. We had written down in advance all the names and the specific gifts we were going to get, and we had also written down where we were going to get them. That list was my lifeline. Especially in the rush and press of the mall, which sprawls out in all directions, with satellite stores on either end.

I’m happy to report that I actually did really well. I made a few tactical errors — like not parking in the first lot I came to and walking in. But that turned out okay, because if I had parked in the first lot, it would have been all but impossible to get down to the other end of the mall. I studied the list carefully ahead of time and used a highlighter to mark the stores where I’d be going. I also kept my focus trained on the task at hand — even if it was just sitting in traffic. I also walked a lot more this year than other years. I found one parking space and used it for two different stores. And I didn’t hassle with finding a space that was as close as I could get to the building. I took the first decent spot I could find, and then I walked to the store.

Imagine that — in past years, I was possessed with finding parking as close as possible, and I would move the car between stores, even if they were only 500 yards apart.  This year, I just walked the distance. Even though it was cold, for some reason the cold didn’t bother me, and it actually felt good to be out and moving.

I think that my 5 months  of daily exercise has paid off, in this respect. I think part of the reason I was always consumed with driving everywhere was that I just wasn’t physically hardy. I was kind of a wimpy weakling, in fact — though more in thought than in body, but a wimply weakling, all the same. But having a good physical foundation — even just from doing an hour (total) of cycling, stretching, and light lifting each morning — has made a significant difference in my willingness and ability to walk between stores.

It might not seem like much, but the walking (instead of driving) between stores part of the trip actually made a huge difference in my overall experience. Walking between stores — stopping at the car on the way to stash my presents — helped me break up the activity and clear my head. It got me out of that in-store madness, the crush and the rush, and it got me moving, so I felt less backed-up and agitated. And that let me start fresh at the next store.

That was good, because the first store was a friggin’ nightmare. It was one of those big-box electronics places, that supposedly has “everything” but really didn’t. It was exhausting, combing through the stacks of movies and music, only to find everything except what I needed. The lighting was awful — extremely bright and fluorescent and glaring. People kept bumping into me, or walking so close I thought they would run me down. But the worst thing was the acoustics. Everything surface was hard and echo-y and the place was overwhelmingly loud, and every single sound was at least partially distinguishable, which drove me nuts. I’ve noticed that acoustics have a lot more impact on me than light, when I’m out shopping. The store was one big cauldron of loud, indiscriminate noise, and my brain kept trying to follow every sound to see if it mattered. I couldn’t function there. Not with the place full of people — and very agitated, anxious, aggressive people, at that.

I eventually went with a gift card and got the hell out of there. I doubt I’ll ever go back when it’s that full. When the place is low-key and all but empty, I can handle it much better. But at this time of year? Not so much.

Walking back to my car chilled me out. Sweet relief.

At the second store — a bookstore — I started to feel pretty overwhelmed. They had long lines, and the place was packed — which is good for the retailer, but not so great for me. I spent the longest amount of time there, in part because I could feel I was getting overloaded, and I stopped a number of times to catch up with myself and remind myself what I was there to buy. My list was getting a little ragged, at that point, what with me writing notes in the margins and taking it out/putting it back in my pocket. So, eventually I just pulled it out and held onto it for dear life. I must have looked a little simple-minded, but I don’t care. Everyone else was so caught up in their own stuff, anyway. My main challenge there, was not getting trampled by Women On A Mission — many of them carrying large bags and shopping baskets that doubled as ramrods to get through the crowds.

One cool thing happened, though, when I was taking a break — I had a little exchange I had with two teenage boys who were talking about some book they’d heard about. I was just standing there, pretending to look at a shelf of books, just trying to get my bearings, when I hear this one young guy tell his buddy, “I heard about this book I should get — I think it’s called the ‘Kama Sutra’ and it’s, like, about sex, and it’s got these pictures… and it’s really old… like, from India or something.”

Well, I perked up at that, and suddenly very alert, I looked over at them and said, “Oh, yeah — the Kama Sutra, man… You should definitely check it out.”

They kind of looked at me like deer in headlights, and they got flushed and flustered and stammered something about not knowing how to find it. It was about sex, and they didn’t know how to ask someone to help them. I so felt their pain…

I confidently (and confidentially) pointed them to the book-finder computer kiosk, where they could type in the title and it would tell them where to find it in the store.

“Dude, you should totally look into it. It’s got lots of information — and pictures — and it’s been highly recommended… for hundreds of years.”

They got really excited and headed for the book-finder kiosk. Here’s hoping they — and their girlfriends — have a very Merry Christmas.

That little exchange got me back in the game, so I took another look at my list and managed to find the handful of books and music and calendars I wanted to get. I headed for the line and just chilled/zoned out. I didn’t get all tweaked about how long it was taking; I listened in on a conversation for a while, till I realized it was mostly about death and health problems people were having.

Oh – and another thing that helped me keep my act together, was the 4:15 p.m. alarm that I have set on my mobile phone. 4:15 is usually when I need to start wrapping up my day at work. I need to do a checkpoint on the work I’m doing, start to wind down, and begin keeping an eye on the clock, so I don’t get stuck in town past 6:00, which is what happens to me when I don’t watch my time after 3:30 or so. I have this alarm set to go off each day, and it went off while I was in the store, which was a blessing. I had completely lost track of time and I was starting to drift, the way I do, when I’m fatigued and overloaded and disoriented.

It startled me out of my fog, and I knew I still had a bunch of things on my list to get, so I refocused and started thinking about what I would get at the next store, so I could just march in and do my shopping without too much confusion and disorientation. After I paid for my books and music and calendar, I debated whether to have my presents wrapped for free, which might have saved me time in the long run. But I couldn’t bear the thought of having to interact with the folks who were doing the wrapping. They looked really friendly and gregarious — Danger Will Robinson! Warning! Warning! Even a friendly conversation was beyond me at that point.

I realized I just wasn’t up to that, and I must have looked like an idiot, standing there in the middle of the foyer, staring at the gift-wrappers for about 10 minutes, but who cares? Everyone was so caught up in their own stuff, they probably didn’t notice me. And if the gift-wrappers were uncomfortable with my staring, they didn’t show it… too much 😉

Anyway, after I managed to extricate myself from that store, I headed for my last destination. Again, I didn’t sweat the traffic getting out of the lot, and when I got to the final store, I parked at a distance from the front doors and walked in through the icy cold, which was good — it cleared my head.

Inside, I consulted my list again and headed directly for the section that had what I needed. Halfway there, I remembered that I’d meant to buy a very important present at the first store, but I’d totally blanked on it. I started to freak out and got caught up in trying to figure out how to get back to that first store and not lose my mind in the process.  Then, I slowed down and stopped catastrophizing, and in my calming mind, it occurred to me that — Oh, yeah — they probably carried that item at this store, so I went and checked, and sure enough, there it was – score! I didn’t have to back to big-box hell. At least, not that day.

I found some more of the presents on my list, and although I didn’t get everything I needed, I made a decent dent. My partner can come with me and help me sort out the other items either today or tomorrow. Or possibly when we get to our family — they usually have some last-minute shopping to do, and they can cart us around with them. And I won’t have to drive.

By the time I got home, I was bushed. My spouse wasn’t home yet, so I called them — they were on their way home and were stopping to pickup some supper. I said I was lying down for a nap, and they didn’t have to wake me when they got home. Then I took a hot shower to get the public germs off me, laid down, and listened to Belleruth Naparstek’s Stress Hardiness Optimization CD. I had a bit of trouble relaxing and getting down, but I did manage to get half an hour’s sleep in, before I woke up in time for dinner.

My partner had a pretty good time at the party, but they said it probably would have been a disaster for me — so many people, so much energy, so many strangers, and unfamiliar surroundings. I concurred, and I showed them what I’d bought that afternoon.

We’d both done well. We both missed each other terribly, but we did get through the afternoon without one of those terrible holiday incidents that has dogged us for many, many years. Like Thanksgiving, which went so well, this Christmas shopping trip actually felt normal. It didn’t have that old edginess that I always associate with holiday shopping. It didn’t have the constant adrenaline rush. In some respects, it feels strange and unfamiliar, but you know what? If strange and unfamiliar means level-headed and low-key and plain old sane, and it means I can keep my energy up and pace myself with proper planning… well, I can get used to that.

Yes, I’ve done things differently this year. And it’s good.

Using my head – for real

A while back, I was wracked with a sort of remorse. It was really sinking in that the way I worked before is not the way I worked now. I saw it more each day, on the job again with people whom I had worked with, 10 years ago. I am not the same person I was back then. That’ s for certain. My temperament tends to be more snarky and snappish, my attention span is shorter, and my ability to grasp and hang onto information over extended periods of time is very different than it used to be.

It’s a problem. ‘Cause this job and my ability to perform it is my bread and butter. And I don’t want to let the people on my team down. But I was having a hell of a time remembering the things I learned only a few weeks ago, especially when I hadn’t used them on a daily basis since I learned them. I was getting pulled off my past projects by new priorities, and I was spending more time testing and tracking and planning my work, than actually doing it. So the stuff I thought I had “down” about a month before, seemed like it had mysteriously evaporated.

It was a problem. It felt like a huge one. And I felt like I was spending all my time playing catch-up.

So that’s what I’ve been doing, lately. Catching up. It often happens that I  need to retrace my steps and redo my work, so I’m doing it once more. This time, though, I’m employing a different learning strategy than I used before. This time, I’m actually putting the learning into action by applying it to my workaday tasks — and working on a private project I’ve been designing for the past several months. This private project actually relates to my workaday world — it’s a special productivity tool I use to manage my strengths and limitations and constructively overcome the hurdles that get in my way, based on what I know about my own tendencies, and my inventory of strengths and weaknesses and coping skills that have worked for me in the past.

This is good. Not only am I integrating my whole life — personal and professional — in complementary ways, but I’m also creating new ways to master the new skills I need to acquire. Instead of just reading and making notes, like I did six weeks ago, I’m now using the new skillset I need to master.

It’s gotta be hands-on. Or I’ll never retain the new information.

It’s so wild, how I forget that. I’ve written before about how I learn best — by doing — and there’s a part of my brain that knows all about it. But putting it into action is the challenge. A big one. And I forget that I have to take a break, let the information sink in, and actually use it before moving on to “learn” something else. Instead, I keep reading. It’s not enough that I learn — and master — one single skill at a sitting. Oh, no — I must read and conceptualize more… and more… and more…

I’m not sure what it is — I think my hungry brain wants to race ahead and learn-learn-learn. It gets into this groove and instead of stopping to implement what it’s just read, it gets lazy or acclimated or lulled into a false sense of security, and when I’ve gotten to the end of one section or one chapter, it wants to jump ahead and read more stuff that’s new, different, interesting. It gets into this habituated flow and gets stuck in a loop. Especially when it comes to reading, studying, taking in new information.

That’s very unproductive, and it has a tendency to overwhelm me, before too terribly long.

But I can’t be too hard on myself over this. The fact of the matter is, I’ve had six weeks for the initial flood of information to sink in. It may feel like I’ve forgotten it, but when I get back into using the information I read about a while back, a little bit at a time, I can actually sense some familiarity with it. So, it’s not gone. It’s just tucked away in the back of my head, and I need to find a way to coax it out again into plain view, where I can put it to good use.

Here, again, is a great example of where my brain is leading my mind astray. It’s convinced that I’ve lost what I gained, some time back, and it’s ready to panic, run for the door, relegate me to second-class status. The mis-firing processes in my brain are interpreting this extended learning process as a sort of failure. Its artificially elevated standards say, “If you could really do a good job with this, you’d be proficient, by now,” totally underestimating the complexity and level of involvement required to do this new work I’m taking on. My brain gets turned around and confused and disoriented, so it thinks it’s lost in the wilderness for all time and is going to wither and die there like that kid from New Jersey who starved to death in Alaska, instead of it just being momentarily disoriented on a street corner in New York and needing to ask for directions from a passerby. It can’t immediately see a way through my passing frustration, so it thinks there is no way through. It can’t immediately access the information I stashed some weeks back, so it thinks it’s gone for good.

But here’s the thing — it’s not that I’ve lost what I’ve learned before. It’s that it’s filed in a virtual drawer in my head that I just need to find and open up again. I have learned, actually. It might not feel that way, but I have. And now I’m shifting into a different stage of my total learning process. All that reading and reading and reading without associated mastery isn’t a terrible thing. It’s not — I just have to realize that the reason I was reading and reading and reading before was different that what I thought it was — and it’s actually a lot more pragmatic and clever than I realized up till this point.

The real reason I was reading and studying like crazy before was for preparation, not execution. I was reading compulsively, not to master the material, but rather to familiarize myself with it, to get the feel of it, and to get myself to a point where I could listen to someone talk about all the topics and subjects and issues and aspects without being flooded with an overwhelming tidal wave of information overload… and eventual panic. Thinking back, I can remember many instances where conversations with my team members landed me in the middle of an emotional avalanche that totally shut down my brain. I just blanked. They were talking and talking about all this stuff, and I wasn’t able to keep up. So, I spent a lot of time reading about the things they were talking about. It was for the sake of putting my anxieties about verbal communication at rest, rather than implementing anything.

That first piece — the panic switch shut-off — was the first thing I had to do before I could move forward. I realize that now. And in its hidden wisdom, my mind devised this way for me to do just that — through reading and studying and familiarizing myself with the material before I started into all the doing.

So, actually, it wasn’t bad for me to spend all that time just reading and not doing. In fact, it wasn’t spending time, it was investing it. And now it’s paying off. Because I can sit through a conversation with people who are talking about stuff that used to be brand-spankin’ new and totally intimidating… and I don’t freak out.

That’s a good thing.

Getting on with just living life

I had a good session with my New Therapist (NT) today. They say I seem to be doing really well, and I’ve really turned around my feelings about work and my ability to deal with the stress, with “lightning speed”.

I guess that’s gratifying… I almost question it, however. No… wait. I don’t question it. I have come to terms with a lot of difficulty in a really short time, and it feels good.

Now, if I can get my head together around my neurologist…

Basically, I’ve been seeing a new neuro for some other issues I’ve been having, but they’re proving to be less logistically helpful, and they seem to think that my difficulties are psychological.

Ah, yes… that again.

I suspect — if I turn out to get a regular neuro at all — I’ll end up going to someone with a whole lot more familiarity with TBI than this one. I’m still looking for someone who can help me with the neurological aspects of my situation, but I’m not getting much support, either from the medical community or my partner and some of my friends, who would just love it if I just let all this diagnostic stuff drop.

And to be honest, I probably would, too.

It’s all well and good to observe myself regularly for signs of things that need fixing, but sometimes a person just needs to get on with life.

Lookit — It’s Memorial Day weekend. The sun is out, the skies are blue, the trees and grass and all the living things are just exploding with life. Why spend all my free time sitting around contemplating my issues?

Why indeed?

Okay, so I get what Give Back Orlando is all about – watching yourself regularly to identify head injured moments and do something to address them. But I’ve been doing that for quite some time, and at some point, I just need to take a break. Read a book for fun. Play some cards. Watch a movie. Maybe even go for a walk. Just have fun. And so some writing that isn’t all about my deep dark issues.

There’s an idea…

Disaster at Sea – My ill-fated encounter with “Life of Pi”

Some years back, my parents gave me the book Life of Pi for a present. It’s the story about a guy from India whose ship goes down at sea, and he ends up in a lifeboat at sea with a bunch of wild animals (that had been on the ship) with him in the boat, and how he manages to survive the voyage with a tiger on board. I guess my folks thought I would enjoy it, since I work in technology and I have a lot of dealings with folks from India on a regular basis. Plus, it was full of interesting facts about animals and zoos and …  I’m not sure what else, because I couldn’t finish the book. Bottom line is, it was just the kind of book I loved as a kid, and they seemed to think I’d really get a kick out of it.

In retrospect, some Benadryl would have done me more good in improving the quality of my life. I know my folks were only trying to help me entertain myself, but my attempt at reading the book — about a year after my fall in 2004 — was so ill-fated, it stands as an excellent example of what TBI has done to my thought process and memory… and how that affects my ability to read, remember, and make progress with written material. It also highlights how TBI has utterly stripped me of one of the great joys of my past life — engrossing, fact-filled fiction that educates as well as entertains.

If you’ve read Life of Pi, you know that it is rich in detail and the action is pretty cerebral — it’s perfect for my parents, who are very heady types and love to noodle around with ideas that intrigue them. It used to be perfect for me, too, but from my very first attempt at reading the book, it became pretty clear that something was different with me. I started reading and got pulled into the backstory… the early years of the protagonist in India, his upbringing, his experiences, and how he ended up on a ship with a bunch of animals on it.

I did prett well for the first 20 pages or so, but I found that the farther into the book I got, the more turned around I got. I thought I was following, but things were starting to not make much sense. There’s a lot of information in there about animals and India and zoos, and the action switches between a lifeboat at sea and a house in — I think — Toronto, Canada. And the more information that was packed into the storyline… the more references there were to past info that I “should have” remembered… the more confused and frustrated I got.

Once upon a time, I would have really thrived on this sort of writing. It read like a wave of accumulating detail, each page building on past pages of information, insight, cross-reference, and so on. Talk about a recipe for TBI disaster! Before long, I was totally lost. I couldn’t keep track of who was doing/saying what… which animals were in the boat… what the main character was talking about… if it was in the present or the past, or wherever. It was the supreme WTF?! reading experience for me, and I had to keep back-tracking to refresh my memory about who was who and what they were doing and why they were doing it. Here’s a picture of how my reading experience went:

Attempt at reading Life of PiIt was really very frustrating. There I was, with this book in hand that my parents were sure I would just love — and just a few years before, I probably would have. But I kept getting so confused and so turned around by the details and losing my place and running out of steam and not being able to concentrate and not being sure what was happening and why I should care… it took me months and months just to move a few pages ahead, and even when I was making good progress, I would have to retrace my steps, check details earlier in the story, and then slog on through, trying to pick up where I’d left off.

Eventually I just gave up and left the book on my bedside stand.

My intention was to pick it up again and finish reading it, but time passed, I lost track of even more details about the story, and ultimately I had to hide the book — out of sight, out of mind — that danged reminder/hint that something was wrong with my brain.

The wild thing was, it didn’t even occur to me that I might be having genuine cognitive problems reading and comprehending and remembering. I thought that the book was the problem. “It just didn’t hold my attention,” I told myself. “It was obscure. Obtuse. Disconnected.” Or somesuch. I didn’t stop to think that it was my brain that was having the problem — it was the book… all about the book. Oh, no – the problem couldn’t possibly be with me!

I spent the next year or so dodging questions from my folks about how I liked the book. I gave them some vague answer — like I have done my entire life, when they’ve asked me about things or tried to talk to me about things that I was foggy or confused about. I didn’t have the heart to tell them that I couldn’t finish it. I couldn’t tell them that I’d become hopelessly lost, a quarter of the way into it, and I just didn’t have the stamina or the patience to slog through the ordeal of  — from the way they described it — a pleasant and entertaining read. I didn’t want them to feel badly — for me, or for themselves. They had been so sure I would love the book, and in a former incarnation, I’m sure I would have. But that kid they once knew was gone, and in their place was this overtired, cranky, easily confused, easily provoked wild person with a hair-trigger temper.

Crazy. Just crazy.

Eventually, I gave the book away — I almost made the mistake of giving it back to them for a holiday present. Thank heavens I at least remembered where the book came from, so I didn’t have to dig myself out of that embarrassing situation. It’s bad enough losing something that meant so much to me once upon a time — my love of fiction — but having to explain it to people who don’t perceive or understand that loss is a recipe for despair. And I’m not going there, if I don’t have to.

Mind-brain-body-stress connections

I’ve been reading Robert Scaer’s book The Body Bears the Burden, about how the brain and the body interact in times of stress and trauma. It is absolutely fascinating reading, and I’m surprised it’s not a best-seller. It really clears up a lot of confusion for me and gives great insight into how the body’s experiences can shape the brain’s activity. He talks about the fight/flight response and the body’s instinctive freeze response, too. I’ll have to write more about it, when I go through it again. My head’s kind of whirling right now.

One thing that I immediately got… After reading just a bit of his book, I can now let myself off the hook for freezing “like a deer in headlights” when I’ve been in situations of high-threat. I am usually pretty hard on myself for being a ‘wuss’ when I freeze up in times of intensity. It doesn’t happen all the time, but now and then it does, and then I tear myself a new ___ (well, you know) for days after, beating myself up for not speaking up, not stepping up, not being as capable as I would have liked to have been. Turns out, I don’t necessarily have any control over freezing up. It’s instinct. Instinct that’s designed to keep me alive.

Yeah, I’ll have to write more about this later. It also ties into my paper about A Perilous Relief, which I’m in the process of researching. (See the link on the left for a current table of contents that will take you to what I’ve written so far.) There’s only one problem — I have to keep going back over it to re-read sections, because my attention span leaves a little to be desired… but I don’t realize I stopped understanding what I just read, until a few pages past the point where my brain stopped parsing the information.

Apparently, according to my neuropsych, this is not uncommon with TBI. So, I’ll just have to factor it into my research and leave myself plenty of time to digest everything I’m taking in. Lucky for me, it’s fascinating stuff, so I don’t mind taking my time with it. I don’t mind at all.

Of danger-seeking and head injury

Here’s a great post about a new book by Richard Hammond, On the Edge, which is about the British television presenter’s near-fatal crash in a jet-powered dragster in 2006.

I’m not sure I’m going to read the book, myself, as I’m just now savoring the triumph of having finished a library book I checked out two months ago, which is still days overdue. I had expected it to take me a week to finish, but I just polished it off, this morning. Since my fall in 2004, I’ve had tremendous difficulties sustaining my attention over lengths of books. Articles I can handle. Abstracts are my friends. Full-length books that have lots of detail, not so much.

Anyway, the post brings together two of my pet topics — risk-taking/danger-seeking behavior and tbi. How they can feed each other… the love of risk can put you in real danger of head injury… and head injuries can cause you to make choices that put you at risk of further harm.

I’m still noodling away at A Perilous Relief, and once I finish it, I may check out the book. Until then, though, I’m savoring my ability to finish the book I started two months ago.

What a difference a year makes…

Well, it’s been a year, since I started this blog. It’s been a little over a year since I first came to terms with the fact that my psychological/cognitive/behavioral/emotional issues can be traced back, in no small part, to the array of head injuries I’ve sustained over the years. In a way, it was a relief for me to realize it. It was a relief for me to realize that the way that I was had a reason. That the way that I am can be explained. That I’m not the only one who struggles with this, and that I’m not the only one with the whole array of otherwise confounding issues that I have a really hard time explaining to others.

Thinking back, knowing now what I know, I’m amazed I didn’t put two and two together sooner. Then again, I had no reason to. In fact, I had plenty of reasons NOT to put it all together. This type of injury does a great job of hiding itself away. It’s the kind of injury nobody wants to have, not many people want to acknowledge, and not many people want to talk about — unless they have one. And even the people who have had TBI’s are not always able to discuss their situation clearly. Because the very part of us that grasps concepts and explores them and initiates discussion, is the part that’s broken.

Broken brain, indeed.

But at the same time, let’s not forget the amazing resilience of this organ atop our shoulders. As Norman Doidge amply illustrated in his great 2007 book The Brain That Changes Itself (which was the first book that made it safe for me to consider that I had neurological challenges and really has credit for helping me to objectively and intimately explore my issues), the human brain can — and does — alter itself, modify its processes, remap its pathways, in countless, subtle ways, so that the body it lives in can continue to function and participate in the world that feeds it.

When I started this blog, it was my intention to not only talk about my life as a high-functioning, long-term multiple mild tbi survivor, but to also talk about my life as a person. As someone who is more than the sum total of their individual parts. As a person whose mind and spirit remain remarkably intact, in spite of the injuries my brain has experienced. I wanted very much to show the difference between the brain and the mind — the difference between the organ itself and that mysterious, even mystical, part of the self that reasons and directs and drives and experiences and emotes and instigates and reacts and loves and, well, lives.

I wanted to show that even if you have gotten hit on the head, been knocked out by a fall or a blast, taken a hard hit and recovered more slowly — and very differently — than expected (or desired), or you’ve wrecked your car or crashed your bike or been thrown 50 feet by an impact, you still have value as a human being, and there’s literally no telling just how much of yourself you can get back — or how much of yourself my may discover for the first time.

I wanted to put the everyday life of an mtbi survivor out there, as best I could, so people like me — who are often isolated and confused and frustrated and in some ways utterly beyond help — can have a place to see their experiences mirrored, to hear their calls echoed, to have written proof that there is someone else out there who is dealing with this very challenging, often troubling, sometimes rewarding condition in a very present, very active way.

And I had hoped that maybe, perhaps, some psychotherapists and/or doctors and/or teachers and/or folks in law enforcement might stop by to take a look at this online journal to familiarize themselves a little bit more with what it’s like to be on the inside of a broken brain. Maybe, just maybe, they might be able to learn something from reading these words that they either are too proud to ask about, or they didn’t realize they needed to learn.

It’s all but impossible to know if I’ve succeeded at any of this. I’ve gotten comments back from folks about how reading my words has helped them, or that I’ve provided a great service to others. But the blogosphere is in pretty short supply when it comes to completed feedback loops, so I just have to trust that whatever I’m putting out there is of some benefit to someone, somewhere. The only real gauge I have of my contribution is thinking whether or not it would have helped me, years before, when I was really struggling with the after-effects of my accidents/falls/other injuries, and didn’t even know where to look for help.

I figure, if I feel like what I’m writing would have helped me, it may just help someone else out there. I know that, as of this date, over 8,800 page views have taken place. I’ve approved 103 comments. Akismet has protected me from 7,560 spam comments, and the most views I’ve gotten on any one day in the last year has been 125. I’m not the most popular blogger out there, and the vast majority of people out there have no clue that this blog exists. But I continue to post, doing my best when I can. And I hold out hope that this may be doing someone out there some good.

I know it’s helping me.

Because blogging, quite frankly, is an answer to my prayers. For many years, as a kid, and then as a young adult, I dreamed of becoming a published author. I told myself I was an artist and I was a rebel… never mind that my art often had more to do with relieving the pressures of living with undiagnosed neurological issues, than contributing to the outside world. I dreamed of putting my words out there for others to read, even if it meant not making a lot of money or garnering much fame. Money is nice, but fame I’ve rarely craved — and then, only in the eyes of those I hold in the deepest respect.

As my TBI-related difficulties soured and destroyed one publishing contact after another, one professional relationship after another, I slowly relinquished my dreams of being published, and I became convinced that I was pariah to the literary world. In many ways, I was. I mean, I had some really excellent opportunities to be published, but I could never follow through or get myself straightened out well enough to make good on them. I was beyond help. Literally. And everyone who dealt with me probably thought I had deep-seated emotional/psychological issues — with good reason.

Well, today I know better, even if they don’t. Today I know better than ever where I stand, and the parts that I don’t know enough about, I’m finding out about. And today, I can sit here in my “infirmary” — a makeshift bedroom away from the rest of the household, filled with liquids and pills and tissues and steam form the humidifier — and write words that will be seen. Because I’m online. Because I have something to say. Because others find me through search engine searches and WordPress tags and links that people email to them. I can look at my dashboard and see who’s looking for what information — PTSD, TBI, temper, employment issues, pain, emotional turmoil, overcoming tbi, mental illness and brain injury, and more — and I can speak to what they are looking for. From my own experience. From my own life. From my own corner of this big, wide, incredible world where everyone is pretty much grasping for answers, about now.  I can surf tags to find out who’s talking about what I’m talking about. I can surf other blogs to see what others are saying. I am anything but alone, in these days of WordPress interconnectedness, and for once in my life, I can know that I am joined with others, through even the finest of gossamer threads. But I am joined.

One of the interesting things about my TBI experiences and after-effects
is now it both connects me with the world and separates me from it. On the one hand, like Kara Swanson says over at her blog, a brain injury can teach you a whole lot about compassion and help you extend it to people who you’d otherwise dismiss, or diss. It can humanize you (as my partner says it has me, since I really came to terms with it over the past year), it can make you more approachable in some ways, and it can make you have much more appreciation for the parts of your life that function well, in the face of so much that doesn’t.

On the other hand, it makes interacting directly with the rest of the world pretty difficult at times. For example, I keep my identity secret in this space, because I don’t have the resources to navigate the intense interpersonal demands that personal familiarity makes on me. There’s something in my brain that just short-circuits, when there’s too much in put. I also don’t do much reaching out to others (which probably limits my readership) because I run out of steam and I fail to fully sustain my connections with other people. I end up looking/sounding a bit flighty, as well I am, because I not only lose my place with where I’m at in the contacts I’ve made with people (who answered whose email last? who commented on my blog post that I haven’t yet responded to?), but I also tend to forget about them, period. There’s a reason my blogroll is somewhat limited. I forget to update it. And I forget that I need to update it. Social networking is all very well and good, but it requires a level of involvement that I simply cannot sustain. And if I try — which I have, in the past — I just screw it up, one way or another.

Oh, well…

The bottom line is, in this space, I can write. And online, others can find my writing. Perhaps not as many as I would like, but enough to bump up my stats each day. I’ll just keep plugging, try to stay true to my cause, and sustain what level of honest detail I can, along the way. In the end, even if no one ever reads this, it helps me. Tremendously. And that, in itself, is well worth the effort.