Have something to say about TBI issues and recovery?

Share your experience with all our readers!

Why not write a guest post for this blog? I would be great to add more voices here, and many of you have great things to say. Simply write your post in the Comments field below. If it is a “good fit”, I will then copy it from there and publish it as a main post.

I can’t make any guarantees, but give it a try. If it is not a good fit, I will tell you why and you always have another chance to rewrite it, so it does fit.

For those of you who are working on your organizational thinking skills, this can be a valuable way to refine and develop your abilities, so by all means, give it your best shot and share what you’ve got. I have found blogging to be an excellent way to improve my thinking and organizational abilities, and it might do the same for you.

So take a chance and start writing!

Thanks for sharing.

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2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 42,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 16 sold-out performances for that many people to see it.

Click here to see the complete report.

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.

Is playing safe? Is it safe to return to play?

Recently, someone posted about the Maher mouth guard being effective protection against TBI in sports. I don’t know enough about it to speak with any authority, but on the other side, there’s the impact of low-level hits to consider. I believe I’ve posted about this before, but it bears repeating:

When we think about football, we worry about the dangers posed by the heat and the fury of competition. Yet the HITS data suggest that practice—the routine part of the sport—can be as dangerous as the games themselves. We also tend to focus on the dramatic helmet-to-helmet hits that signal an aggressive and reckless style of play. Those kinds of hits can be policed. But what sidelined the U.N.C. player, the first time around, was an accidental and seemingly innocuous elbow, and none of the blows he suffered that day would have been flagged by a referee as illegal. Most important, though, is what Guskiewicz found when he reviewed all the data for the lineman on that first day in training camp. He didn’t just suffer those four big blows. He was hit in the head thirty-one times that day. What seems to have caused his concussion, in other words, was his cumulative exposure. And why was the second concussion—in the game at Utah—so much more serious than the first? It’s not because that hit to the side of the head was especially dramatic; it was that it came after the 76-g blow in warmup, which, in turn, followed the concussion in August, which was itself the consequence of the thirty prior hits that day, and the hits the day before that, and the day before that, and on and on, perhaps back to his high-school playing days.

This is a crucial point. Much of the attention in the football world, in the past few years, has been on concussions—on diagnosing, managing, and preventing them—and on figuring out how many concussions a player can have before he should call it quits. But a football player’s real issue isn’t simply with repetitive concussive trauma. It is, as the concussion specialist Robert Cantu argues, with repetitive subconcussive trauma. It’s not just the handful of big hits that matter. It’s lots of little hits, too.

That’s why, Cantu says, so many of the ex-players who have been given a diagnosis of C.T.E. were linemen: line play lends itself to lots of little hits. The HITS data suggest that, in an average football season, a lineman could get struck in the head a thousand times, which means that a ten-year N.F.L. veteran, when you bring in his college and high-school playing days, could well have been hit in the head eighteen thousand times: that’s thousands of jarring blows that shake the brain from front to back and side to side, stretching and weakening and tearing the connections among nerve cells, and making the brain increasingly vulnerable to long-term damage. People with C.T.E., Cantu says, “aren’t necessarily people with a high, recognized concussion history. But they are individuals who collided heads on every play—repetitively doing this, year after year, under levels that were tolerable for them to continue to play.”

Speaking from experience, I don’t see how it’s possible to discourage kids who live, breathe, eat, sleep contact sports to give them up — even if it means they add years to their lives and they avoid the dementia and cognitive problems that can appear over the long term.

I, myself, have apparently had enough concussions in my life to make my brain increasingly vulnerable to damage. The fall I had in 2004 almost cost me everything, and it was totally a fluke — or divine intervention — that spared me and my family from complete ruin.

Parents and coaches and spectators alike should give the impact of repeated subconcussive impacts a good deal of thought, and weigh the immediate benefits versus the potential long-term costs to the next generation.

Just my two cents… on top of Malcom Gladwell’s amazing piece.

Update 12/18/09

I’m a blogger, and this is my blog, and I haven’t posted anything for days, so now it’s time for me to do the thing I do as a blogger –

post.

More and more people, it seems, are discussing head injury. Traumatic head injury. Concussion. The NFL announced new guidelines — the real benefit from that, I believe, is that people will start to see football as the potentially very-dangerous sport it is, rather than an all-American pastime that is a staple of every kid’s growing-up years.

A staple, sure. But at NFL levels, it can be lethal. Perhaps not right away, but decades on down the line… who am I and what happened to my cognitive function?

Anyway, I’ve had a really long day — made much longer by being over-tired, under-rested, and having a wrinkle show up in my insurance that doubled my deductible to an unsustainable level, so now I have to go insurance shopping.

Why do I think this healthcare bill isn’t going to help?

I wish I could be more positive about it, but I am tired, I need food and rest, and more than anything, I need to be with my extended family, kicking back for the holidays.

For now, I shall supp, and then sleep.

Amen.

Feeling normal. Normal is good.

Back from Thanksgiving for real, now… Back in the swing of things at work, where everything is going crazy for year-end. They had another round of layoffs at work, but I was magically spared.

I’m pluggin’ away at my new job, rallying back after what was a less than stellar review of my first cut at the project I’m working on. Must be smart about this. Will be smart about this. Will use fewer pronouns, so I think faster 😉

But I’m tired. Tired and ready to just relax. After my 10 p.m. call tonight, when people overseas complete a job I asked them to do, and I check their work.

Still digesting Thanksgiving time. And trying to find space in my schedule to just take a break. One of my coworkers stopped by earlier today, saying they didn’t have enough work, and they were just occupying themselves with other things. I wasn’t sure what to say. I’d give anything to have less work — but this way I’m safe(r) from layoffs, I guess, which is good.

The main challenge I’m facing today, is accepting the fact that I had a normal Thanksgiving and I’m having a normal life. A normal life with average expectations. It’s to be expected that this new line of work will tire me out. And it’s to be expected that I can share time with my family and not melt down or lose it or freak out on them. It’s to be expected — today, anyway. In past years, not so much.

So, I’m tired, yes, but I’m still grateful. I’m grateful that I am having a normal life, with all its ups and downs. I’m grateful that I had a good time with my family. Most of all, I’m grateful that I am actually feeling normal. What a change this is, after 40-some years of NOT feeling normal.

I think I’ll celebrate Thanksgiving through the end of the year.

Woo hoo! It worked!

I just got back from the best Thanksgiving ever.

I had my plan, and I stuck with it. Each day, before I did anything else, I got up and went for my brisk walk. Then I went back to my parents’ house, had a drink of water or juice, and closed myself off in an extra bedroom to stretch and lift my weights (which I brought with me). I had my breakfast in the usual fashion, and I took my time.

Whenever I got overloaded (which happened a few times), I stepped away and took a nap. I had help, too. My spouse was there to help “cover” for me, when my family was wanting to talk and visit and spend time. And people didn’t seem to be pushing as much as they were in other years.

I managed to get through the holiday without melting down or insulting people or saying things that I hadn’t thought through. I was careful and deliberate, and I was very, very present with just about everyone I talked with.

I think people really saw a difference, too. By the end of the weekend, my mom was asking me about what exercises I do, and she had that look in her eye that said she was going to try them.

I also (finally) talked to my folks about the TBIs, and how they had played a role in the problems I had as a kid. I’ve been wanting to do this for some time, now, because my folks aren’t getting any younger, and I didn’t want them to spend their final years burdened by the same regret and remorse that they’ve carried around with them for as long as I can remember. My parents have spent a lot of time apologizing to me for being bad parents, and I never knew what to say.

This Thanksgiving, I figured out what to say:  “All the problems I had weren’t your fault. They were neurological, and they were because I got hit on the head a lot. It’s nobody’s fault, and all those people who gave you a hard time for being bad parents were wrong about you. And they were wrong about me.”

It really choked them up. My mom got scared, and my dad had to step out of the room to compose himself. My parents love me a lot, and they could never understand why I didn’t respond to them the same way my other siblings did. Now they have a very important piece of the puzzle, and maybe now we can start healing some of the old hurts that never made any sense, but hurt, all the same.

Yes, my strategy did work — If I take care of my body, my mind can take care of my brain.

I was very careful about what I ate (tho’ I did overdo it on Thanksgiving Day — but who doesn’t? At least  it was real — not junk — food!), I paced myself well. I took my time, and I did not rush the things I often rushed (like packing the car and moving around). I was very mindful of my surroundings, and I took time to breathe deeply and relax.

Now I’ve got a lot of body aches and pains — too little sleep and too much long driving and too many unfamiliar activities — but while I was with my family, I was in a good space, and I was in good form.

And for that, I am truly thankful.

A learning life is the best rehab for me

Tomorrow is Thanksgiving, and today I’m traveling to my extended family, several states away. I expect the traffic to be heavy, and I expect the trip to be long. I’ve spent the past week preparing myself for this mentally, emotionally, physically, and spiritually. I’ve consulted with my neuropsych, I’ve checked in with friends, I’ve been eating right and I’ve been working out and stretching regularly. Last night I actually got eight hours of sleep.

This year is very different from past years, in that I’m not pushing myself up to the very last minute when my spouse and I hit the road. I’ve been taking it easy, taking the different tasks in manageable pieces, not biting off more than I can chew, but keeping on task and on point. And I’ve been using my timer, to make sure I stay on schedule.

This year is also different, in that I called my parents ahead of time to find out what the plan was going to be for the next few days. I checked the weather, too, so I could be prepared to offer suggestions. I’ve requested that we just take Friday “off” and relax and do some light activity outside — the weather is going to be beautiful, and I would really like to spend time with my folks, just hanging out and talking.

I am also planning to share with them the findings of my neuropsych evaluations and work. I’ve made tremendous progress, over the past year, and I want to share the info with my parents in a positive and constructive way. I haven’t been able to do that, till lately, as I’ve had a lot of reservations about my progress (not helped by my psychotherapist, who has been trying to talk me into “accepting” (i.e., giving up on) my limitations and settling for less of an amazing life than I believe I can have.

I’m not sure how they got to be that cynical, but I’m not on the same page with them, and I am certainly not going to settle for less, just ’cause I’ve had some misfortunes along the way.

Anyway, I’ve been giving a lot of thought to how much progress I’ve made over the past year or so. My neuropsych says they are encouraged and inspired by my progress, which is great. I’m really happy I can return the favor of their assistance. I really have come a long way. A year ago, I was pretty turned around, I didn’t have much direction, and I was very muddled and confused by the ramifications of my issues. I had a long way to go, to figure things out.

My previous therapist wasn’t helping matters, by constantly focusing on what my mother did, as a source of my woes. I invested a lot of time with them, essentially being led down the wrong path — it wasn’t necessarily my mother (or my father) that was the root of my issues. It was more the neurological context in which I was living in my childhood — all those unidentified, misunderstood, pesky issues that complicated and intensified every experience I had, and had me “pegging” emotionally and behaviorally all over the map.

Now, I have to say, my current psychotherapist has helped me regain my balance from before. I think my previous therapist was trying to regress me, to find some deep, dark secret hidden in the innermost recesses of my psyche, so they could exorcise my demons or something like that. And my current therapist helped me regain my balance by helping me focus on the logistics of my day-to-day life, rather than floating around in the distant past. And I am very grateful for their help (tho’ I have to move on now).

Indeed, I think the thing that has helped me the most, over the past couple of years, has been the help I’ve gotten in dealing with my everyday life — keeping my issues in mind, understanding them and how they impact me, and getting to the bottom of the problems I can expect to have, given different situations. Being aware of patterns, like:

I get tired after a full day of intense activity, and when I get tired, I have a tendency to get turned around and agitated, which adds to my internal confusion and throws gasoline on the fire of my temper… and really contributes to me melting down over every little thing

helps me immensely, and it also helps the people around me to help manage and anticipate my issues before they get completely out of control.

And one of the big things that helps me identify my patterns is examining my life on a regular basis. I take a lot of notes, and I record a lot of my experiences. I look back on my days and weeks, and I watch for issues and patterns that emerge over time. I write down the times when I am having a really hard time of things, and I identify the contributing factors. And I draw pictures of my problems and the “flow” I use to deal with them. I work with my life — the failures and the successes — as my own individual recovery plan and practice. And I see results.

Real results. Like promotions at work. Like improved relationships with others. Like a more creative approach to my life, overall. If I can get past the old bad habit of being so hard on myself, and I can treat my difficulties as challenges (from the outside — from my faulty wiring — rather than from my inside character or personal worth) to be tackled creatively … challenges just waiting to be overcome… well, then, the ultimate results of my examined life are tangible improvements, the likes of which I never thought I’d see happen.

Truly, this is remarkable. I always thought — before I knew why things were always getting so screwed up with me — that I was flat-out doomed to failure. I had precious little expectation that things would ever turn around for me permanently… I figured it was always just a matter of time, till things got mucked up for no reason I could identify, and everything I’d worked so hard for just went away, swallowed up in the sinkhole of my life.

But now that I’m paying attention to the basics, and I’m following up to deliberately study the results of my actions and see how they can be improved… Now that I’m treating my life like the miracle that it is, and I’m studying my daily “playbook” with focus and intention, and I’m refining my approaches, based on what I know about my limitations, I no longer believe that I am stuck in endless cycles of attempt-failure-attempt-failure-attempt-failure.

My life is different now. Because I’m living it differently now.

And it’s good.

In case you’re wondering how I go about doing this, here’s the basic flow of my practical-life-recovery-plan:

  1. I figure out what I want to do. I understand why I want to do it, and how it fits in the overall picture of my life. For example, I figure out that I need to exercise first thing in the morning, and I need to really work up a sweat, because I have been feeling a little sluggish lately and I need to “pump up” my system a little more.
  2. I do it. And I track what I do. For example, I do my morning workout, but I don’t manage to work up much of a sweat.
  3. I figure out if I accomplished what I set out to do, and if I succeeded, I celebrate in some way. If not, I ask myself why that is. For example, I make note that I worked out — and I congratulate myself for doing that — but I didn’t work up a sweat, and I wonder why.
  4. I figure out why I didn’t accomplish exactly what I set out to do, and I ask myself what I can do differently to change that the next time. For example, while I’m having my breakfast, I look at how I’m doing, and I realize that I’m tired and distracted. I figure out that I didn’t get to bed at a decent hour the night before, and I also see that I let to many errands wait till later in the day, which pushed my schedule back farther into the evening, so I couldn’t relax and get to sleep at a decent hour.
  5. I think of alternative strategies I can follow to make changes in my daily life, that will help me accomplish what I set out to do better today. For example, I spend a little more time planning my day in a way that will let me get my busy-work done first thing, and give me more time in the afternoon to take it easy and wind down.
  6. I go about my day and check in with myself periodically, to see how I’m doing. I make a point of remembering the goals I did not accomplish, which I really, really wanted to accomplish, and I work a little harder to keep myself in line. For example, I check my daily work list periodically to make sure I’m staying on schedule and make sure I’m not overloading myself with extra stuff in the evening.
  7. Last but not least, I follow up. I do a check-in later to see how I’m doing, and if I’ve accomplished the goals I set for myself, I celebrate and reward myself. For example, if I get to the end of the day without wiping myself out, I treat myself to a little bit of television, watching a show on cable that I really like. Or better yet, I make an early night of it and I get in bed at a decent hour, which lets me sleep and sleep and sleep till I’m actually rested.
  8. And then I do it all again the next day.

To some, it might sound arduous and like a lot of work, and it is. But it’s good work, and it’s really more of an orientation to my life, a kind of spiritual practice, if you will. In the Give Back Orlando material, they talk about how TBI survivors need to be more mindful of their lives, and I have found that to be very true. But even more importantly, I’ve found that I want to be more mindful of my life. Yes, it’s work, but I don’t mind the work. Yes, it’s different from how most people live. But I’ve never been like other people, so why start now — and why feel badly that I can’t be like them? I’m just fine, the way I am.

In the end, yes, it does take more work to live this way. In the end, yes, it is more time-consuming to do things that a lot of people do quickly and easily without a second thought. In the end, no, I don’t have as much time to fritter away on non-essential activities.

But in the end, the payoff is huge. I get to have a life.

Better yet, I get to have the life that I want to live.

I’m sorry… I think?

I’ve been thinking a lot about my reaction to the post about the BIA booting a blogger from their conference. And I’m wondering if I should regret my hot-headed reaction.

On the one hand, I have received tremendous help from the BIA in some respect. On the other, I have heard stories like this — and other accounts, where people were actively discouraged by the BIA from saying that you can recover from traumatic brain injury.

It’s a mixed bag. As most things with people are.

The thing is, though, the Brain Injury Association is more than a person. It’s a collection of persons which professes to assist other persons. And as such, if it’s going to truly assist, I would think they would welcome the presence not only of a member of the press but also someone who has been impacted by brain injury.

Or maybe they’re wary of brain-injured folks in general, knowing what they do about “us”…?

Who can say? One of the things I’m taking away from this is yet another reminder of how hot I can get on short notice. And it warns me to check myself periodically, to make sure I don’t go off the deep end. It reminds me I’ve had multiple concussions, multiple mild traumatic brain injures… and as such, I owe it to myself and to others to measure my responses carefully, and weigh the possible effects/consequences, before I let fly.

I had considered taking down the post from before, but it’s a valuable learning/teaching lesson. So, I’ll leave it up there, warts and all.

You never know what’s possible

Literally. You never know what people are capable of doing — both good and bad — till you see them in action. And you never know whether or not you’re going to be surprised, disappointed, encouraged, or discouraged, by whom and what you encounter along the way.

One of the most damning things that anyone can do to a TBI survivor, is tell them to ratchet back on their expectations in life. You never, ever know what is possible — especially when it comes to the brain.

Certainly, there are facilities that people lose. Certainly, there are greater difficulties in areas that used to be so easy. Certainly, there are additional challenges, and learning how to adapt and compensate takes a tremendous amount of effort.

But it can be done. RECOVERY FROM TBI IS POSSIBLE. And anyone who tells another person otherwise is doing someting far worse than attacking their body — they are attacking their soul.

Now, I’m not saying that everything is going to be hunky-dory, and all you have to do is pretend things are fine, and they will be. I tried that for most of my life, and it didn’t work.

What I AM saying, is that with a shift in approach, a course correction, a new set of coping mechanisms and strategies that are specifically tailored to address cognitive/behavioral/neurological/physical changes that come in the wake of TBI, IT IS POSSIBLE TO HAVE A LIFE — AND A REALLY GOOD LIFE, AT THAT.

Anyone who tells you different is serving a master other than hope.

It could be that they are trying to “protect” you from harm. It could be that they are trying to protect themselves from the difficulty of seeing you struggle. It could be that they just have no imagination whatsoever. But whatever the reason, if you have someone (or more than one person) in your life like that, you owe it to yourself to get some new friends. Find support. Find believers. Find people who have the innate ability to trust and have faith.

And keep going.

Because you never, ever know what else is possible in your life.