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.

Ouch

I have not been sleeping nearly enough. Now my clothes hurt me. My skin is very sensitive and it feels like  it’s being raked by a wire brush, when my clothes brush against my skin.

Complain, complain, complain. I’m wearing myself out with the complaining.

Work is going pretty well, and when I keep track of what I’m supposed to be doing, I am keeping up with the best of ‘em. At least, I believe I am

I’ve noticed an interesting phenomenon with how I fill in the gaps of my comprehension. Where I am missing details, like what someone’s reaction to me is, I tend to think the worst. They’re angry with me. I’ve messed up. They’re quiet because I’ve offended them and they are thinking about what to say back to me.

But it’s not always true. It rarely is, in fact.

I think this comes from a lot of past experiences of troubling interactions with people. When I was a kid, I seemed to get a lot of stuff wrong, and people used to get so mad at me. Of course, it always puzzled me. I never thought I was wrong when it was happening, but over the years, I gradually came to realize that I messed up a lot more than I thought I did.

In a way, it was kind of good that I was as clueless as I was. But in retrospect, I cringe.

Well, I can’t do much more cringing tonight. I’m dog-tired from dealing with my car conking out – battery died when I was at my neuropsych. And then having to call AAA (and renew my lapsed membership online before I called them) and figure out how to pay for the battery… Ugh. I can do without another day like this.

Oh well… I can’t worry about it. In another six months, I won’t even remember this, probably. I’ll have moved on.

My clothes hurt me, so I’m going to cut myself a break and take it easy tonight. I’ve earned it.

Better Living Habits to Help My Brain Work Better

This just got posted as a comment at  my post about confabulating as a kid

1. You can get away with treating your brain pretty badly and it still works okay, as long as you don’t have a head injury. That rule changes dramatically after a head injury. The brain malfunctions under any kind of unfavorable operating conditions.
2. For example, if you skip breakfast and eat fast food for lunch, expect your brain to get sluggish. Having a healthy breakfast, including some kind of meat or other protein, is strongly recommended.
3. You should not subject your brain to any kind of nutritional deficiency. That means drinking plenty of water, and avoiding starving yourself.
4. There are many theories about nutritional effects on brain function that recommend avoiding sugar, white flour, or both. These are major ingredients in fast food. Although science has not reached agreement that eating a diet which is heavy in fruits and vegetables, whole grain bread, and healthy sources of protein (fish and chicken) helps your brain to work better, enough nutritionists suggest this kind of diet to make it worth considering.
5. Lack of sleep is a major source of reduced brain ability, especially in people who have had head injuries. To the extent that you can do so, you should make sure to get enough sleep. If you have difficulty in sleeping, this topic will be discussed in an advanced chapter.
6. If your injury makes you prone to getting tired, there are “energy management” techniques that allow you to make best use of the capacity you have.
7. Try to do your most difficult and important work early in the day.
8. Try to avoid working under tension as much as possible, as that burns extra energy.
9. Try not to do one kind of activity for long periods of time. Switch off from one activity to a completely different kind. For example, after reading something difficult for half an hour, switch to doing dishes or gardening. When you do this, you stop draining the last chemicals out of the reading systems of your brain and start using other, different systems. Switching activities like this can allow you to get a great deal done without getting completely exhausted.
10. If there are stresses where you live or spend time, work on reducing those stresses. For example, after living or hanging out in a messy room for a long time, some people find that it actually reduces stress to straighten it up. If your living area is infested with bugs, and that bothers you, take steps to get rid of them. Any reduction in stress is likely to make everything work better.
11. Getting some physical exercise every day seems to help the brain to work better.

Narrowmindedness breeds disability

Permanent Vacation is a post everyone should read. It’s important. And it’s true. And since the chances of you getting through life without encountering at least one person who needs a little extra help are slim to none, you should read it, think about it, and let it guide your future thoughts and actions.

The issues around disability have been a regular part of my life for a long time. I’ve lived with disabled people, and I’ve worked with them.

Back in the day before I fell down the stairs in 2004 and my life almost completely fell apart, my day job was ensuring that large-scale websites were accessible for disabled folks and others with accessibility needs. Accessibility isn’t just about helping the blind use a website, or offering text-based alternatives to audio for hard-of-hearing or deaf folks. It’s also about making a website usable for folks who can’t use a mouse (too much mouse use can do that to you – trust me), or for folks who needed text to be larger than the 20-something-chosen miniscule stylized fonts that folks born after 1980 seem to be particularly fond of. It covers everything from how you navigate a website to how you use the information. There’s a lot to cover, and a lot of software engineers don’t want to bother with it.

I’m not sure why – it’s just basic human decency that drives the accessibility train.

At the time I was making websites more accessible, I had no idea that one day I would have my own disability to deal with — a twice-hidden disability, no less, which is as adept at hiding itself from me, as it is at hiding itself from others. Granted, one of the things that obscures TBI as a disability is the fundamental human aversion to brain problems. We don’t want to know about it, don’t want to think about it, don’t want to explore it, and we certainly don’t want to have to live our lives around a traumatic brain injury, concussion, whiplash, or whatever else you care to call the damage to what’s between your ears.

There’s a weirdly Darwinian streak we all seem to have within ourselves, when it comes to surviving head trauma. Either we heal, or we don’t. Either we’re okay, or we’re not. No middle ground. No gray areas. No good days or bad days. Just OK or NOT OK. And if you can’t make a go of living your life after you’re diagnosed and have treatment… or after having a few days/weeks/months off to get back on your feet… and if you can’t go back to functioning as normally afterwards as you did before, then you deserve to be shunted to the back of the room/bus/line, as someone who is “just not trying hard enough.”

Well, there’s head-injured, and then there’s stupid. These kinds of attitudes towards head-injured people are just plain stupid. And they do more to hinder the long-term well-being of TBI survivors, than any amount of brain trauma.

I could get incredibly riled over this — and believe me, I have in the past — but I’ve got a full day ahead of me, doing things I love to do, so I’m not going down that road. I will say, however, that if people could just get some basic facts about head injury and its effects… if people in general could just realize that an injury to the brain is indeed an injury and it never stops affecting the person who was hurt… if people could just step back and take a little bit more time and stop being so haughty and egotistical in their attitudes toward disabled and otherwise challenged folks, the world would literally be a better place.

See, here’s the thing… A serious, enduring injury (like TBI) is not the sort of thing you can heal all on your own. It’s not like a broken leg. You can’t put a cast on it that people can see and sign — and help you with, when you’re approaching revolving doors. The brain (especially) has a way all its own, and it’s a mystery to even the most accomplished experts, how it heals — and why. And while the brain may restore itself to some extent, the full-spectrum impact of a TBI is not the sort of thing that can be healed only by the physical knitting together of the severed connections — which can actually never be restored to their pre-injury state… Once the damage is done, it’s done (from what the experts say).

The full-spectrum impact of a TBI can touch every aspect of your life, from your sleep/wake cycles, to your tolerance of heat and cold, to your ability to understand what people are saying to you, to your tolerance for frustration. It can make you jumpy and irritable and verbally abusive, and it can cause you to say and do things you would never want to do, by reducing your brain’s ability to inhibit unwanted words and action.

And what’s more, the changes don’t just affect the injured party — they affect everyone that person comes in contact with, either directly or indirectly. Even if you manage to present as perfectly normal, even if you manage to keep your act together on the surface, if you’ve got TBI related issues like increased distractability, lower thresholds for anger, and sleep disruptions, the cascade of behavioral and logistical effects can create subtle cracks in the foundation of your everyday life, which ultimately compromise your ability to get on with your life in a mature and responsible fashion, even your physical and mental health.

Here’s how you can get into trouble, thanks to a TBI:

• TBIs have a nasty way of slowing down your thought processing speed.
• Sleep disruptions have a nasty way of resulting in increased agitation and distractabilty.
• Increased distractability can lead to “careless mistakes”.
• These can lead to arguments with others.
• Arguments can escalate if your flashpoint threshold is low.
• A low anger flashpoint threshold can become even more explosive if you’re tired and not thinking well.

Now, if the people you’re dealing with have no idea that you’re having trouble sleeping, and you take a little while longer to process what’s happening, and they don’t have a clue how quickly your temper escalates (through no intention of your own, by the way), that just compounds the problems. Everything is complicated by impatient people who are in a hurry to get stuff done, without being mindful of the one they’re dealing with. Nothing is easy, when someone does stupid stuff to provoke you, or doesn’t cut you any slack. A hidden disability has a nasty way of getting worse, when you have to deal with someone who has no compassion and no patience for others who are just operating at a different speed than them… and who say and do unkind and hurtful things, just because they can.

Truly, it doesn’t have to take much to help someone with a disability like TBI get through the day. All it takes is some understanding and humility and respect. If you know full well that everybody has issues, that everybody has an impairment of some kind (large or small), and you understand that people-helping-people is a great way to not only get the job done, but also humanize your interactions, then the abilities of both parties are enhanced, countless issues can be avoided on the spot.

The injured person standing at the counter gets an extra few minutes to figure out what they want to do, and the person waiting on them gets an extra few minutes to catch their breath in the midst of a busy day. It’s not a bad thing.

But if the people you’re dealing with don’t have patience and compassion and aren’t willing to cut you a break, they create havoc for both you and them. The lack of simple, fundamental human decency, and a close-minded judgment of those who are different in some way, does far more damage in the long run, than the actual injury itself. Treating the disabled like they’re sub-human registers with us on a deep and fundamental level that wreaks havoc with our concentration, our focus, our available energy stores. Instead of solving a problem, like ordering from a menu or discussing a customer service issue, we’re plunged into a life-and-death battle for our basic human dignity. When people who are supposed to serve us refuse to treat us with respect, we walking wounded have to shift our attention away from the real problem we’re trying to solve, and shift over to the debasing challenge of convincing the person who’s supposed to help us solve the problem that we deserve to have the problem solved.

Which is a total friggin’ drain — one that should never have to happen.

Look… everyone has issues. Can we agree on that? Everyone has some problem of some kind. There’s no escaping that fact. Some of us have more obvious or more comprehensive injuries than others. But it’s really how we deal with our problems, and how we treat others who have different kinds of problems, that determines the debilitating effects of the injury.

If someone with a TBI has more problems when they’re rushed and pressured, then others can help them out by not putting all sorts of pressure on them, and not rushing them to do and say things they need to think through, first.

If someone with a TBI has more problems when they don’t get enough sleep, then their friends and family can help them by not demanding that they stay up late to watch a movie or television with them.

If someone with a TBI has hard of hearing, then others can help them by talking directly to them, not covering their mouths, and not making additional background noise while they’re talking.

But if everyone who thinks they’re okay is locked into the idea that if you don’t behave in such-and-such a way… or you don’t think or talk at such-and-such a speed… there’s something wrong with YOU, then the small problems become much larger. And the after-effects of injuries become even more debilitating.

Ultimately, I believe there is a solution to almost every problem out there. And with the right information and the right mindset… the right education and intention, issues that are sticky can be unstuck, and disability can be diminished. But if people who are supposed to help, flatly refuse to do so, then they themselves are helping to create and perpetuate true disability.

It’s not the injury that’s ultimately the problem. It’s ignorance and smallmindedness.

Sequelae and Intervention Following Head Injury

A great section from Neuropsychology and the Assessment of Mild to Moderate Head Injury by Dennis P. Swiercinsky, Ph.D. Note:  “Sequelae” means

1. A pathological condition resulting from a disease.
2. A secondary consequence or result.

The American Heritage® Dictionary of the English Language, Fourth Edition

I usually call them “after-effects”. My comments are in italics below.

A mild head injury, such as from a fall, an automobile accident, or a work mishap, often brings the person to the attention of a physician or a hospital emergency room.

But sometimes this doesn’t happen. Sometimes we can’t get help, whether we refuse it, or people don’t realize something significant took place.

If there are no complications or other injuries apparent, the person is checked over and sent home, perhaps with a prescription for pain relievers and a checklist to watch for any complications that might develop.

I wonder if the checklist shows what to do, if the complications arise. Seems like that would be helpful.

Without timely, appropriate, and comprehensive follow-up diagnosis, education, and treatment, the lingering problems from uncomplicated head injury can mushroom into seemingly relentless frustration.

True – and that’s what often happens with MBTI survivors. Even moderate TBI survivors, who get no (or inadequate) medical treatment, can end up without adequate follow-up diagnosis, education, and treatment. And how those lingering problems add up…

Underdiagnosis or misdiagnosis of the multiple cognitive, behavioral, and somatic complaints following head injury is common. Ultimate recovery and maintenance of a positive attitude toward recovery, as well as adjustment to the emotional trauma of the event that caused the injury, depend on early, appropriately intensive, and comprehensive intervention.

It’s a nice thought, that early, appropriately intensive, and comprehensive intervention is a possibility for people, but TBI happens so frequently, and so few people are adequately aware of it and its “wrinkles” that it seems like hanging your hat on early intensive and comprehensive intervention is a set-up for failure — or perceived failure.

Too often, symptoms are acknowledged by health care providers but are understated or minimized.

Amen to that! My doctor thinks it’s okay for me to not get a full 8 hours of sleep a night. And I can’t tell you how many doctors and healthcare folks have shrugged off my issues — pain, fatigue, etc. It’s maddening.

The urge to get persons back to work too soon and without comprehensive understanding of the injury often creates emotional and cognitive obstacles and usually worsens the symptoms and outcome due to creation of stress, greater discomfort, chronic re-injury, and feelings of distrust and resentment.

Yeah, we’re all supposed to get back to work immediately. What makes this particularly dangerous, is that a person who has recently experienced a TBI is depending on the assistance and guidance of those around them, to help them deal with everything. We’re friggin’ brain-injured, for heavensake! The fact that education and treatment so often fall into our own hands — the very people who need help — strikes me as the ultimate irony. And yet, so many of us are put in that position. We cannot even get help, lots of times, unless we push for it. Of course, it’s difficult to push for it, when your reasoning faculties and your cognitive abilities have taken a hit.

Educating the patient, family, employer, case manager, and others involved in the lifestyle changes caused by brain injury is of extreme importance.

Yes, because like I said above, the survivor is the one in need of help — and should not be the one holding the reins of the team of horses. Making a recent TBI survivor resposible for their own diagnosis and care and survival is like asking someone who is legally blind to drive a team of  Budweiser Clydesdales down a busy boulevard. They may be able to do it, but it’s a crapshoot. Someone who isn’t brain-injured needs to be at the helm, and they need to be properly educated. Preferably, everyone in the survivor’s immediate circle of influence.

Everyone needs to understand that even though no bones may be broken, no cuts sustained, and that the injured person may look and talk just fine, there is real injury.

And people need to be a lot less afraid of brain injuries. Probably the biggest hurdle to me getting help and support from anyone in my life around my TBI’s is their mortal fear of the prospect of brain injury. It’s mighty difficult to discuss your needs and your situation with people who are frozen like deer in headlights at the sound of the words “traumatic brain injury”.

The complex injury involving cerebral contusion and diffuse axonal injury within the brain, trauma and stretching of cervical muscles and supportive tissue, abrasion within the cervical vertebrae, soft tissue injury to muscle and circulatory structures of the head, chronic muscle strain due to guarded behavior in response to pain, changes in cerebral circulation and perfusion, and potential neurochemical and neurotiming changes in brain function provides the foundation for a host of behavioral, emotional, and cognitive changes.

So, how do we educate people about this? How?! It’s a lot to consider and take in — how can we get the right information to people who need to know, in ways they can actually understand it?

Diminished self-confidence, negative self-reference, inflexibility, desire for withdrawal, slower thinking, emotional unpredictability, and frustration intolerance stem from the complexity of injury.

Yes, they do. And it’s a vicious, self-perpetuating cycle that we get sucked into. The more it’s allowed to escalate and continue, the worse things get… Sometimes until it can’t possibly get any worse…

If the patient, family, employer and others do not understand the injury and its consequent dynamics, unreasonable expectations, charges of malingering, and inappropriate treatment will typically follow. Failure to understand and appropriately treat mild to moderate brain injury can result in prolonged and less than desirable ultimate outcome.

Yes, yes, and yes. All true.

The good news is, it’s possible to recover from late-effect TBI’s, even if you never received adequate medical care or diagnosis or assistance. And it’s a difficult thing, and a pain in the butt to have to do it yourself, but with focus and intention and the right information, it IS  possible to get back on track and reclaim your life after TBI.

Like the folks at Give Back Orlando, Dr. Swiercinsky actually takes seriously the cognitive-behavioral impact that even a mild TBI can cause. And the mention of the long-term effects that are less than desirable gives me hope, as well.

The main issue I have with what Dr. S says, is the feeling that all is lost, if you don’t act quicly. People have been having head injuries since the beginning of time. Millions of us have them every year. And yet, we’re still here. Granted, there’s a lot we can do to improve our lot — and we have a long way to go, to fully understand how best to treat and support TBI survivors. But all hope is not lost, if you didn’t get immediate, intensive, extensive help.

I’m living proof that survival is possible, even with precious little help from the rest of the world. I’m not recommending it to anyone — it’s much harder than it should be — but it is  possible.

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.”

Read more: http://www.newyorker.com/reporting/2009/10/19/091019fa_fact_gladwell?currentPage=all#ixzz0byHSDrSd

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.

Okay, FINE, I’ll self-assess!

Well, the long weekend is almost over, and I’ve been spending the past few hours logging my experiences from last week, so I can share them with my neuropsych this coming week.

I keep daily logs of the things I plan to do, and I also track my successes/failures when all is said and done. Being the busy (compulsive?) individual that I am, I usually have a full page, each day. I use color highlighters to mark the things I get right and the things I don’t. Green means success, pink (which I hate) means failure because of my cognitive-behavioral/physical issues, and orange means something got in the way or I didn’t complete things for a benign reason (like I ran out of time).

I also have a log in my computer (aren’t spreadsheets wonderful?) where I list the things I’ve planned to do, and how they turned out, and what the reasons for my successes/failures were. I have been typing in my last few days’ worth of experiences, and as usual it’s a real eye-opener.

I tend to get very caught up in the moment… lose track of things I was working on a few hours or a few days before hand. I am very present-oriented, as well as future-oriented. I guess enough unpleasant, confusing mess-ups have happened in my recent and distant past, that I just got in the habit of not paying any more mind to experiences, once they’re over.

That’s fine, if I don’t care to ever learn from my past… but these days, I’m feeling more and more like I really need to pay attention to my lessons, get what I can out of them, and make a lot of effort to incorporate them into my life.

So, I’ve been logging my experiences into my computer log, so I can take them with me and discuss them with my neuropsych this coming week. It’s funny — they have been so supportive and encouraging and impressed wtih my progress… I’ve kind of gotten the impression that they don’t fully appreciate the range of my difficulties and how they get in my way.

Good heavens, but I keep busy! Good grief, should I say… My hands are tired from doing three pages’ worth, and my head is spinning with what I’m seeing. Basically, the pattern that’s emerging is me jumping around from thing to thing, not completing some important tasks, and running off to do side projects for no other reason than that I can.

On the other hand, I have made some really substantial progres, here and there. But I haven’t taken the time to really sit with it and appreciate it. Things like me getting my 2010 priorities in order… cleaning my study at last… doing my daily exercise… and taking really good care of my house… These are very important things I’ve accomplished in the past week, and I need to pay attention to them. I need to give myself some props.

I also need to give myself a good swift kick in the rear, because there are a lot of things I’ve let slide. It’s not enough for me to make a list in the morning, check some things off, and then not pay any more attention to it, after 2 p.m., which is my pattern. I really need to stay on top of myself, or I’m going to get hopelessly swamped in partially-finished projects. And I’m also running the real risk of taking on too much — yet again — which can spell disaster when it all comes to a head, and the non-essential things are crowding out the essential ones.

I must admit, I hate to self-assess. It’s difficult and painful and awkward and it reminds me of all the problems I have.

But it’s a new year, and I really have no choice but to change my dissipating ways. I need to rein myself in and buckle down to get done what I need to get done — what I’ve promised my boss I’d get done.

I expect to feel like crap for another day or so. I always feel terrible about myself and my life, when I start self-assessing. It’s so uncomfortable for me to see all the things that are amiss in my life… all the things that need fixing. But what’s the alternative? Leave them alone, and leave myself to rot? Don’t think so.

I can do better than that.

And so I shall.

Don’t worry… you’re average

I’ve been giving a lot of thought, lately, to how I’ve been managing my issues. I’ve got a host of them, ranging from sleep issues, to temper problems, to chronic pain, to headaches, to constant ringing in my ears. Impusivity is a problem, as well as distractability. And completing what I start has always been a challenge — one which I intend to take on, head-on, this year.

Over the course of my 40-some years, I’ve developed a bunch of coping mechanisms, as well as camouflage. I’ve figured out how I can at least simulate full functionality when others are looking. When they’re not looking, I tend to get into trouble… and then I spend a lot of time trying to cover my tracks to make sure I don’t look bad or others don’t figure out that I’ve got problems.

And it’s a double-edged sword, because on the one hand, if I allow others to see my issues, they often end up treating me like an impaired idiot, jumping in to do things for me, or giving up hope that I’ll ever amount to anything. It works against me in many ways. On the other hand, if I hide my issues, then I can’t get help for them, and I end up stewing in my own brew, which keeps me from living up to all my potential.

I’ve been coming up against this double-whammy in both therapy and in my neuropsych rehab work. I tried being really straightforward with my therapist about how many issues I have, the depth of them, and how they affect my life. But rather than appreciating how hard I’ve worked to get where I am, and  appreciating the degree to which I’ve recovered (and continue to recover) they ended up treating me like I’m impaired and cannot be left to my own devices. They also ended up talking down to me and treating me like some sort of idiot. They seem to be impaired by the two-headed hydra of not knowing how to listen very well, and thinking they’ve got all the answers figured out. They seem to have arrived at a conclusion about me that is not at all comfortable — namely, that I’m permanently impaired. And their responses to my talking about my life has been oriented towards reassuring me that I am still a good person and I can still have a good life, even though I’ve had all those concussions.

It’s okay for me to be two standard deviations below the level I should be operating at, because that puts me in the average range. It makes me just like the majority of people walking around out there.

Okay, here’s the thing, though — I’ve got nothing against being average or being normal. But only if that average is actually true to who I am and what I’m capable of doing. Some of my test scores came back extremely high. At the 99.5th percentile. The vast majority of my test scores come back in the mid to high 90th percentile. I’m built for operating at a very high level. So, compared to myself, being average is not normal. It’s sub-normal. And being sub-normal, relative to myself, is a loss.

I think that measuring ourselves by others’ yardsticks is always problematic. It’s easy to do — especially when you’re measuring against very common criteria, like height or weight or hair color. But when it comes to our individual gifts, our individual talents, and our individual shortcomings, using others as a measure is just no good.

That’s like telling someone who has recently gone blind that there are lots of blind people in the world, and a lot of them get along just fine. Or telling an amputee that they should be grateful they have at least one good leg. People get along just fine without both legs. Or telling someone who has lost a dear and cherished loved one that some people go through life without any love in their life, so they should be glad they ever had it in the first place, and quit crying about not having that person with them anymore.

Downplaying the losses experienced through mild traumatic brain injury because the losses don’t represent an “average” loss — they just put you in the company of normal people — is not only insensitive, but also completely overlooks the real issue — the loss of part of the self. The loss of abilities that are part of a person’s core being. The loss of capabilities that make one unique and individual and make the full expression of one’s individual gifts and talents possible.

By asking me to give up my remorse over the loss of some of my abilities — like information processing speed, attentional abilities and capacity, my ability to interrelate verbal information, and my unreliable, swiss-cheesey short-term memory — my therapist was asking me to give up wanting to fully be myself. When they told me I shouldn’t worry about my deficits, because they just put me in the “average” range, they were asking me to abandon my hope of uniqueness, my ability to distinguish myself from the rest of the world. They were asking me to give up on myself.

And I’m just not going to do that.

It’s a new year. It’s a new decade. I have been re-orienting myself to my new understandings of myself for a couple of years, now. There is much that I still must do, to achieve the level of functioning that I desire. There are still many aspects of my life that are in disarray and need to be brought into line. My monthly insurance costs will be more than doubling in a month, and I need to arrange for new coverage that meets the specific needs of my household, and that intimidates me intensely. I have to get my time-management habits in better order. And I MUST complete the tasks I set out to do, years ago, which are still languishing on my to-do list.

This is a new year, a new decade. And I am more committed than ever to restoring myself to full functionality on the level I desire, not what others prescribe for me. I will simply not be told, “Don’t expect too much… You can’t do it… Don’t ask too much of life… Just be grateful for what (little) you can get.” And I will not engage in working relationships with people who refuse to entertain the possibility of miracles.

All of life is a miracle. The fact that any of us develops properly and is born in one piece is a miracle. The fact that we grow and learn and experience all that we do, is a miracle. And the fact that any of us can go through all that we must, as living, breathing human beings, and still remain psychologically and emotionally intact, is one as well… not to mention the fact that we can — and do — heal from some terrible, terrible things.

2010 is here. This is no time for dwelling on despair and what can’t be fixed. I’m here, I’m alive, and I feel in my bones that distinct possibility of… possibility. I’m not average. None of us are, really, if we look closely at ourselves. We are all wonders, in some distinct way. We all have seeds of greatness in us, be those seeds public or private, vast or intimate. And the true purpose of processing and rehabbing in the wake of mtbi is, in my opinion, not finding normal ways to settle for less, but finding extraordinary ways to fully realize our true potential, even in spite of our difficulties.

I’m not worried. And I’m not average. Now, to get some work done…

Remind me to never do THAT again…

Over New Year’s Eve, I went to a firewalking ceremony. Some friends of mine are into walking on glowing coals, and they said it would be a good experience for me to have. Personally, I was more interested in a bonfire than walking on coals, and I didn’t actually intend to “do the walk” with everyone else. I didn’t intend to sit through the little presentation that was offered before everyone walked, too.

But by the end of the evening, I had sat through the presentation, broken a board with my bare hands, and walked across glowing hot coals. By the wee morning hours, I was high as a kite. And now I’m paying for it. Big time.

Because as much as I enjoyed staying up way past my bedtime.. and as much as I enjoyed the company of the folks I was with… as powerful as I felt as that board snapped under my hand… and as much of a thrill as I got from walking barefoot across glowing coals… the benefit was short-lived, but the gut-churning after-effects are still with me.

See, one of the goals to the evening was “getting rid of old stuff that is holding you back.” Breaking the boards and walking on coals were supposedly for breaking free of limiting patterns and getting rid of untrue self-talk. The intention was to symbolically shatter misconceptions about ourselves, as well as find out we could do things we didn’t think we could. And that’s fine. We can all use that. My argument has to do with the depth, breadth, and scope of the changes we were supposed to experience, and the lasting effects on me, in light of my neurology.

I got the impression from the person leading the firewalk, that they considered firewalking a way to completely let go of “old stuff”… to break free from self-limitation, and step into a whole new way of being in the world for the new year. That’s fine, but did they honestly think that a single evening could erase a boatload of trauma for participants, just by breaking a board and walking on coals? They seemed to think so. And they really pushed participants to “get in touch with whatever is holding you back,” which included everything from things people had said to us that were untrue, to ideas we had in our heads about what we were capable of doing. It was a lot to compile. And it was totally overwhelming.

Now, maybe it’s possible for neurotypical people to do this sort of thing — list out a bunch of ideas they want to change about themselves, and then symbolically sever their “connection” with those old stories, and have their lives change for the better. But for this particular individual, the prospect of overcoming neurological, physiological, psychological, and emotional issues (many of which are intertwined, and are perpetuated in a complex cause-and-effect waterfall/chain reaction that is hard enough to track, let alone fully understand) in the course of one evening, seems a bit of a reach.

Some people left elated. Others left despondent (because their issues wouldn’t budge). Others took it all in stride and disappeared into the new year. I started out elated that I’d been able to do the things I’d done, but by this afternoon, after I’d woken up from my extended lie-in, I started to feel downright crappy.

‘Cause my “issues” aren’t quite that easy to dislodge. And I felt sort of the same way after the firewalk, that I used to feel after therapy — like I was supposed/expected to have some breakthrough by identifying my problems, but the waters just got more muddied, the more I contemplated my issues. It didn’t help. It made things worse.

With me — and countless other MTBI survivors — the emotional aspects of life are complicated by neurological ones… and the emotional aspects often camouflage the neurological sources of one’s problems. And the more you hammer away at emotional issues, tring to banish them without addressing the underlying neurological sources, the worse it makes a person feel, who’s seeking relief from emotional distress.

And the more today went on, the worse I felt. Because I was/am tired. Totally wiped out, to the point of not being able to think. And I’m also revisiting all those ideas and scenes and concepts we were focusing on last night that I supposedly overcame, unable to filter them and parse them all out, ’cause I’m so tired. I’m all for personal transformation, but there was something prefunctory and a little presumptuous about that firewalk experience. The more I think about it, the worse the taste in my mouth.

Okay, true, it’s been less than 24 hours since I got home from the shindig, and the emotional hangover will probably wear off before long. But still, the whole experience doesn’t sit right with me, and I feel a bit “behind” today — not rested, not rejuvenated, but tapped out and taxed.

I’m going to bed.

My neuropsych doesn’t think I need a therapist who knows neurology

I respectfully disagree. My neuropsych is a great person, and they have helped me tremendously, but when I’ve discussed my therapy situation with them and discussed finding another psychotherapist, they ultimately said that they didn’t think I necessarily needed to find someone who is a neuropsychologist or neurologically oriented.

I gave it some serious consideration and talked about it with my spouse. But we both agree that I really need to work with someone who knows neurology. Not just psychology. Someone who has familiarity with folks who have gotten hit on the head, so they don’t misinterpret my emotional lability (volatility) as some kind of emotional problem. It’s not an emotional problem. It’s a neurological problem. If it were psychological, it’s my understanding that the issues would persist, not come and go quickly, evaporating into thin air as though they never existed.

I’m thinking a lot about this, these days. I have to change insurance plans, and I can’t see a therapist until I have my insurance all squared away, so I have about a month or so to figure this out. I do plan to ask my neuropsych if they can help me find someone who knows about tbi. And explain to them why that is.

I just can’t be labelled mentally ill, when it’s my mtbi’s that are the culprit, not some psychological/mental condition.

I’ve already been down that road with people misinterpreting my situation, and it dug me into a very deep hole I’m lucky to have gotten out of.

Then again, maybe I just need a coach. Someone to walk me through my daily activities, without digging up a bunch of old crap. It’s an idea…