Journaling for TBI Recovery

I’ve been really thinking a lot about the two articles I read lately — the first Offensive Play – Football, dogfighting, and brain damage, by Malcom Gladwell in the New Yorker, and the second The Magnificent Minnesota Nun Brains by Ken Korczak.

They are both really good reads, and I also plan to read Aging with Grace by David Snowdon, which talks in greater detail about the Nun Study and what they learned about how you keep your brain and cognition intact, even in the face of considerable damage.

A bunch of things can be done — living a structured life with like-minded people, keeping a positive attitude, not fretting over material things, tending to your spiritual well-being, and (perhaps most significant to me, these days) keeping a daily journal where you mindfully and deliberately keep track of your daily life and critique yourself to improve where you can.

This matters tremendously to me, because after reading the Malcom Gladwell piece, I got to thinking about my childhood, how rough-and-tumble it was, how many times I got hit on the head in the course of playing, and how many times I was dizzy or woozy or out of it, after falling or colliding with something/someone.

Excerpted from the Gladwell piece:

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.”

The bold parts are the ones that apply to me especially. Because in the course of my life I have had a ton of little hits. Too many to count, really. All those ballgames, the football, the lacrosse, the baseball, the soccer… all those times when I got clocked or had my bell rung or just plain fell and smacked my head… even the times when I didn’t smack my head, but had my head snap back as a result of a fall or a hit or a collision… It’s crazy, thinking back, and I can see how all those impacts of my childhood could easily have added up to a weakened network of connections, which made me more susceptible to more serious effects, long after I quit playing rough sports.

Perhaps my history of impacts explains why I could be in relatively minor car accidents, but be so tremendously impacted by them — unable to understand what people were saying to me, unable to initiate conversations with the police (that would have cleared my record of inaccurate info that the cops entered on the report, in order to cut the guy in the other car a break) and thus  kept my insurance costs lower — unable to function adequately in my jobs after the accidents, so that I literally had to leave and find other pastures.

Maybe that’s why one of the accidents I was in affected me so profoundly, but it didn’t affect the other person who was in the car with me. If my neural connections had  been compromised over the course of 18 years of rough play and impacts, while the other person in the car led a relatively sheltered life that was not as sports-oriented (while I was out on the field, slamming into people and things in various games, they were sitting on the sidelines, playing the flute in the band), it would make sense that the effect of double impacts — front-end and rear-end collisions — would be greater with me.

Of course, there are a ton of different variables, but if repeated exposure to head impacts plays a role, then it makes sense that I’d be more susceptible than I ever guessed I was.

Anyway, everybody’s brain is different, and I understand that self-diagnosing and trying to explain my own situation from inside my addled head can introduce problems with logic and deduction, so I could be wrong about it. I don’t think I am, but I’ve been wrong plenty of times before. The main thing I’m concerned with, these days, is how to avoid the kinds of problems other people with repeated head trauma have encountered, namely, the dementia and cognitive degeneration that can develop over time. Like everyone (who is lucky enough to be alive), I am getting older, and like many folks, I’m concerned about cognitive decline.

So, my thoughts turn to the Mankato, MN nuns, the School Sisters of Notre Dame. I think about this bit of info, in particular:

Amazingly, some of the nuns maintained clear healthy minds even though their brains showed the scars and deterioration characteristic of severe brain diseases, such as Alzheimer’s and strokes.

In the case of the brain of one Sister Mary, who died well into her 100s, scientists were astounded to find large-scale deterioration of brain tissue, and even lesions associated with strokes and progressive Alzheimer’s Disease — yet she remained clear-headed and lucid to the end of her life.

Sister Mary’s brain apparently defeated the effects of these brain diseases by countering them with an unusually rich growth of interconnection between her brain cells, or neurons. Her extra dendrites and axons were able to bypass damaged areas of her brain to keep her lucid and healthy.

I need to do what Sister Mary did. Okay, I’m not a nun, and believe you me, there is no way I’d qualify to join them, even if I wanted to. Fundamental human differences (like anatomy and philosophy) preclude that. But if Sister Mary could manage to remain clear-headed and lucid despite large-scale deterioration of her brain tissue — including strokes and Alzheimer’s — then heck, why can’t I?

Seriously — the nuns are human, and I’m human. Perhaps Sister Mary didn’t grow up climbing and jumping and falling and fighting and tackling and being tackled, but if she was able to keep her act together despite some seriously damaging conditions, then why can’t I?

I may have led the kind of life that’s laid the groundwork for some serious cognitive degeneration as I continue to age, but by God, if there’s a way I can avoid going down the long dark tunnel to diaper-clad dementia and the total loss of everything I hold dear that makes me actually human, then I’m all in.

So, here’s my plan:

• Stay positive (no matter what) – no matter how dismal things may seem, life has a funny way of turning around, sometime or another.
• Introduce structure and order to my life – make sure I plan my days, and then stick with the plan (like they tell me in the Give Back Orlando material)
• Cultivate more discipline to maintain that structure – because the stuff won’t get done by just listing it on a page
• Do what I can to surround myself with like-minded people – friends are important, and I haven’t done enough over the years to cultivate those connections. I know this should change, and so I’ll do that.
• Journal, journal, and journal some more – It worked for Jefferson, Edision, Faraday, Isaac Newton, and Einstein, and it can work for me.

The great thing about journaling, from where I’m sitting, is that it enables me to do all of the above items. It lets me work on my attitude, tweak my outlook, and get in touch with what is holding me back. It helps me introduce structure to my life, not only by committing to do it daily, but also by journaling in a way that is as much planning as it is reflection. I can use my journal to track my progress and develop my discipline — in ways that are appropriate to me. And it can help me work through the things that keep me from others. In my journal, I have a safe place where I can uncork at will, and no one is harmed. Too often, I have just said what I felt to people who either could not hear it, or who didn’t deserve to bear the brunt of my intensity. Using a journal lets me say what I need to say and vent, without the danger of harming others. That’s important. Especially for me. My past is littered not only with subconcussive head traumas, but also with tons of relationships that could not withstand the pressure of my outbursts and lack of control.

So, onward and upward. I have access to information about people who managed to overcome some pretty serious threats to their sanity and cognitive health. I have access to accounts of their lives and scientific investigations into what worked for them. I can avail myself of their teachings and lessons and use them to my benefit — so that I can live out my days in good health and soundness of mind. I have a plan, and I’m determined to stick with it.

All good.

Does blogging make me brilliant?

It’s quite possible…

I’ve been giving a lot of thought to what can be done to help myself not end up like football players described in Malcom Gladwell’s New Yorker piece on Football, Dog Fighting and Brain Damage. I must admit, it wasn’t the best idea to read that story before going to bed last night. It kept me up, actually, which wasn’t good.

Anyway, it’s Saturday, so I can always sleep later to make up the time. And there’s something about drifting in that in-between place, that gets my mind turning in different directions for the answers it craves.

A few years ago, I heard about The Nun Study (by the Universities of Minnesota and Kentucky) which followed an order of nuns in Mankato, MN, who lived longer — and better — than was typical of the average population. They found some interesting things in their study — including the fact that some of the sisters’ brains (after they had passed on and their brains were donated and studied) were chock full of signs of Alzheimers. Yet, they had exhibited none of the symptoms we associate with the degenerative disorder.

In The Magnificent Minnesota Nun Brains Ken Korczak writes:

Most of the Sisters of Notre Dame stay vital and active well into their 90s. There are almost no symptoms that are typical of age-related brain disorders, such as senile dementia, strokes and Alzheimer’s Disease.

Amazingly, some of the nuns maintained clear healthy minds even though their brains showed the scars and deterioration characteristic of severe brain diseases, such as Alzheimer’s and strokes.

In the case of the brain of one Sister Mary, who died well into her 100s, scientists were astounded to find large-scale deterioration of brain tissue, and even lesions associated with strokes and progressive Alzheimer’s Disease — yet she remained clear-headed and lucid to the end of her life.

Sister Mary’s brain apparently defeated the effects of these brain diseases by countering them with an unusually rich growth of interconnection between her brain cells, or neurons. Her extra dendrites and axons were able to bypass damaged areas of her brain to keep her lucid and healthy.

. . .

After examining and dissecting dozens of brains, scientists have come to several conclusions. Interestingly, the secret to the long lives and clear minds of these nuns may be attributed to a couple of simple things.

After looking at dozens of different variables, researchers discovered that the Sisters of Nortre Dame all did one thing that the majority other people do not do — they kept a daily personal journal recording their deepest thoughts, emotions, impressions and ideas.

Also, the Sisters Of Nortre Dame condemn “mental idleness” as sin. They did not allow themselves the frills of mental down time. Most of the Sisters have college degrees and some graduate degrees. They also play a lot of brain teaser games, solve puzzles and engage in rigorous debates at weekly seminars.

Keeping a rigorous daily journal is also required by the Order, and is considered as important as daily prayer, work and devotion to their primary vocation, the education of children. The Sisters believe in thorough, critical self examination.

The journaling aspect of the nuns intrigued scientists so much, some went looking for independent confirmation that daily journaling or diary keeping may be the secret to defeating the brain diseases of old age, and longer life.

Well, they not only found confirmation, but some scientists determined that frequent journaling may be a sure way to raise the IQ of any person, and may even springboard some people to genius level.

. . . (more here)

… researchers pointed to many other facets of their lives which may have contributed to their longevity:

• They belonged to a religious order and prayed daily. Recent independent studies have suggested that people who go to church or belong to any kind of religion, tend to live longer and be happier than those who do not.

• They felt comfortable in the fact that they “belonged” to a supportive group of like-minded human beings. This longevity factor has also been noticed in independent studies on peoples in Japan, Pakistan and Crete.

• They stay physically active as well as mentally active, not slowing down when reaching ages 70s through 100s.

• They actively cultivated positive attitudes.

• They lead selfless lives, and devote themselves to caring and giving to others.

• They rarely worried or fretted over material things such as money, mortgages, taxes and the like.

• They accept death as being a part of life. Funerals for the nuns are said to be almost occasions for joy among the Sisters.

Most of the above, I can relate to. I tend to substitute “spirituality” for religion, but the concept of being part of an organized, regularly scheduled spiritual practice strikes me as being very beneficial. And different people have different definitions of religion and spirituality, so I would imagine that avid readers who are passionate and disciplined about their reading could substitute weekly book club meetings for church. I don’t mean to be sacreligious. Different people just relate spiritually to different things, so those of us who are not regular church-goers shouldn’t be condemned to dementia by association.

Also the journaling aspect of things really caught my attention. Over the course of my life, I’ve kept journals regularly, even when they were full of gibberish and meant nothing to me later on. The simple fact of writing — in longhand — my thoughts and impressions and hopes and dreams and fears and frustrations, may have helped me overcome at least eight distinct head injuries, to the point where my life is unmarked by those injuries to the eyes of the outside world (my inside world is another story). Ultimately, for the sake of my own survival, what the outside world thinks is waaaay important. I can always address my internal issues on my own time and in my own way. But I do need to keep a job.

It’s interesting that I’m coming across this today. A few days back one of my neuropsychs was telling me that keeping voluminous journals is not the best use of time. They would like me to spend my time more fruitfully, making my  mark in the world. Well, sure, I would too, but it’s a good thing to read that keeping a lot of journals is not actually a waste of time.

Now I need to arrive at their office with this article in hand, and hopefully they will revise their opinion. If not, it’s of no consequence to me. I’ll keep writing, regardless.

Interesting — since my fall in 2004 (I’m coming up on my 5-year anniversary of the mild TBI from hell), I have not written much in longhand. It’s like, I just stopped. I told myself I didn’t have any use for my journals, anymore, but the fact was, I was having a hard time writing. I had suddenly become a bit dyslexic, after nearly 40 years of never having that problem. And I was having trouble focusing and concentrating long enough to get words on paper.

Now, it seems, I need to get back to that. Not only because it’s good for my brain, but also because I need to discipline and I need to exercise those parts of myself that are helped by writing in longhand:

• discipline (the ability to put words together in a meaningful way, as well as keeping myself on topic)
• impulse control (the ability to slow down and gather myself when I need to)
• eye-hand coordination (keeping my writing on the lines — or practicing writing on blank paper and keeping my writing in straight lines)
• focus (keeping my mind on the page in front of me)
• checking in with myself in a deliberate, measured way

Yes, the more I think about it, the more sense it makes for me to do this. Not so much for the old reasons — before, I thought I was helping myself realize truths about myself, when I was really wandering around in a fog, much of the time — as for the new ones I’ve listed above.

Also, my writing needs to change. It  needs a new focus. Not this old rambling, wandering, free-association stream of thoughts all the time (though sometimes that may be good to do), but a more focused, more deliberate kind of writing that doesn’t take me away from my life, but brings me into the midst of it.

And all the while, I am continuing to blog. Continuing to share what I’m finding. Continuing to reach out and relate what I’ve found to be useful — or not helpful — in this path of recovery, which is as much about just living my life, already, as it is about specifically addressing TBI-related weaknesses and problems. There’s a whole wide world out there, and there’s lots to talk about. Blogging gives me a chance to do it in a way that isn’t as insular and as esoteric as my own private journaling, and with any luck, it does others some good, too.

And if I do it often enough and with enough focus and discipline, it can help me think better and write better, which in turns helps me feel better about myself, focus on solutions rather than the endless stream of problems that follow me around like so many crying, swooping, begging seagulls following a fishing boat. I’m at the wheel of my own fishing boat, and I’m the one at the helm of my life. I can choose to pay attention to the gaggle of hangers-on and let them distract me from my activities, or I can pay attention to my boat and my nets, and haul in whatever catch I can get.

My choice.

Bottom line is, this writing activity of mine is actually a good use of time, and I need to value it. Even though it’s seemed like an exercise in futility (to myself and others), that belief has been based on incomplete information, and those beliefs can change. Beliefs can change, and so can behavior. I can “bump up” the activities I’ve followed “just for fun” — and practice them as regular parts of my active recovery from mild traumatic brain injury. I can use them as opportunities not only to heal from my recent damage, but also to ensure my long-term cognitive health and happiness.

Fact: I have sustained at least 8 (possibly more) mild (and some possibly moderate) traumatic brain injuries throughout the course of my adventurous life.

Fact: Plenty of people get hit on the head or sustain some other sort of brain damage or degeneration, and some of them live long and happy lives, devoid of any signs or symptoms of their hidden issues.

Fact: Some of those asymptomatic survivors do specific things that appear to help them. Studies have shown correlations between certain behaviors and choices and long-term cognitive health.

Fact: Those activities are things I can do, myself. They are not mysterious or beyond my reach. They include activities like faithfully keeping a daily journal, cultivating a positive attitude, and maintaining a disciplined way of life that is devoted to service to others. I can do them, too. In fact, I have been doing many of them for many years, and this may account for my tremendous success as a long-term multiple head injury survivor.

If the simple act of blogging about my own life doesn’t make me brilliant, alone, certainly learning from the blogs of others — and blogging in turn about it for others to read — can’t hurt.

Onward, upward. And outward. The world is waiting…

Moment by moment – on mindfulness and TBI

About a year ago, I had a conversation with a friend who was wondering aloud how I manage to get through life with the deficits I described to them. I had just finished telling them about my memory problems, my cognitive processing problems, my physical problems, the troubles I had when I was a kid… I didn’t hold back, but just let it all hang out. And when all was said and done, it was a lot to process, even for me (who’s been living with all that for as long as I can remember).

One of their first questions, when I’d finished, was how the hell I managed to get through life? How did I do it every day? How did I manage to make it through so many “regular” situations… not only adequately, but in fact better than many? For years, I’ve worked in high-stress, high-pressure environments that have one crisis after another. For decades, I’ve experienced job changes, moves from one part of the country to another, serious health problems that felled family members, deaths of close relatives, career insecurities, near-eviction… How did I manage to keep it all together, and actually look even more functional than others, who have not had brain injuries?

It sounded a little hokey when I said, it but the first words out of my mouth were, “Mindfulness. I just pay really, really close attention to each moment as it comes.”

At the time, I wasn’t sure that was really 100% accurate. And when I thought about it, over the coming weeks and months, I came up with a whole bunch of other ideas for how I get by:

• mimicking others who seem to have it all together
• being silent instead of speaking up and showing my limitations
• hanging with good people who care about me and can help me
• learning to ask for help in ways that don’t make me look stupid
• learning to be stoic under any given situation, and then falling apart when I’m out of sight of others

The list goes on, of course, and the more I think about it, the more coping strategies I can come up with.

But once I got tired of thinking how else I manage to get by, I came back to my original thought, which was correct:

I get by in the world, head injuries and all, by paying really, really close attention to each moment, and living the very best that I can in that moment.

Throughout the course of each day, countless situations arise which enable me to learn more about myself and be true to that moment.

People approach me for help or input. I can choose to pay attention to them, really get what they’re saying to me, and respond to the best of my ability… Or I can pretend to listen to them, brush them off, and go back to what I was doing before.

People interact with me in stores and public places and at work. I can choose to be pleasant and polite to them, or I can be rude and impatient and make them sorry they ever met me.

Opportunities arise to make choices that will change the direction of my day. Will I dress up for work, or will I dress down? Will I take back roads to work, or will I take the freeway, or will I take the train? Will I slow down when the traffic light turns yellow, or will I speed up?

Every single choice I make through the course of each day has the potential to change my course in good ways or bad. And every action I take is both informed by my neurological profile and affects my personal relationship with my brain. It’s a two-way street. I have to both factor in the issues I have with my broken brain when I decide how to act… and deal with how my perception of myself alters, based on the outcomes of what I chose to do before.   If I neglect the former — e.g., don’t bother to remember that fatigue is a huge issue for me, and it’s impacting my ability to think and coordinate my movements — then the latter can suffer — e.g., I’ll get really down on myself for being dumb or dense or uncoordinated. Even though I know I’m somewhat impaired, I still get down on myself for doing/saying/choosing things that were better left alone. And that takes a toll… like water dripping on a rock and eventually eroding a virtual Grand Canyon through my self-esteem.

Mindfulness matters with me. Perhaps moreso with me than with other folks who are neurologically normal. Because if I want to live my life to the best of my ability, I don’t have a choice, but to force myself to be mindful. When I’m racing through my days, not paying attention to my limitations, not being mindful of where I am and what I’m doing, unfortunate things tend to happen. I rub people the wrong way. I say things I shouldn’t. I get pulled over by cops. I bump into hard/sharp objects and bruise myself. I get snarky with authority figures and alienate my supporters. I tend to end up in hot water, and then I feel just awful. I start to doubt myself. And when I doubt myself and my self-confidence takes a hit, I have a harder time just living my life later on.  Even the most basic activities can become a difficult chore, when my self-confidence has taken a hit… they’re hard enough, as it is, without the added burden of screwed-up self-confidence.

But when I slow down and focus on the present moment… When I’m totally involved — to the best of my ability — in what I’m doing, what someone is saying to me, what is happening around me… When I manage to block out everything else around me and focus wholly on what’s right there in front of me, magic happens. I become involved in my own life. I am able to see, feel, hear, and experience all-round the situation that has presented itself to me. When I can manage to stop the rest of the world from intruding, and I can slow down the action enough to devote my full attention to what’s going on in that moment, at that specific place in time, I can turn the full force of my abilities towards it, and be true to it.

Now, looking around at websites about mindfulness, I’m finding a lot of mystical stuff. Enlightenment stuff. Claims that mindfulness is the path to Buddha-hood. A cure for psychological ills. A cure for the soul. I don’t know about all that. I think that mindfulness is certainly a key part of becoming a fully conscious individual. But in my case, mindfulness isn’t something optional that I add to a personal spiritual practice for the sake of additional help. It’s a central and esential part of my day-to-day coping strategies, without which I’d be totally sunk. If enlightenment comes along with it, then great. But I’ll settle for basic functionality.

And that’s exactly what it offers me. Because when I’m not paying attention, when I’m not cognizant of the fact that I’m overly tired, when I’m ignoring the fact that I’m getting more and more agitated, bad things happen. I lose my cool. And when I lose my cool, I blow up. When I blow up, I say things I don’t want to be saying. I say things I don’t really mean. I break things. I throw things.  I flip. Trust me, it’s not pretty. And people close to me are occasionally afraid of me, which does not feel good. Ultimately, I start to close down, shut people out, stop communicating with them, start to get down on myself… and I slide down in that sinking spiral… sometimes into total and utter despair. The cost to myself and those around me is very high, when I’m not being mindful and paying attention to what’s going on with me.

But when I am paying attention and I’m aware of where I am and what’s going on with me, I can manage my limitations. I can see that I’m tired, and take a nap. I can see that I’m not following what someone is saying to me and either ask them to clarify or make a note (a real note on paper, ’cause I’ll forget mental notes). I can tell that my attention is wandering and bring myself back to the moment. I can see that I’m starting to lose my cool for no good reason and physically remove myself from the situation – walk away or even run, do something different, or just stop talking. I can prevent myself from going off the deep end and overreacting to what others are doing and saying. Just reminding myself that I’m  being “very TBI” at the moment chills me out. I can remind myself that my brain is misbehaving and I’m probably getting overwrought for no good reason. And I can stop the downward slide before it starts.

I cannot even begin to say how important this is. For myself, and for everyone around me. It means the difference between being a good partner and being a vexation (and sometimes a threat) to the ones I love. It means the difference between having a conversation and having a fight. It means the difference between finishing a thought and taking a definitive action, and getting mired in bogus details that keep me from going anywhere. It means the difference between being a TBI victim and a TBI survivor.

Mindfulness is not just an optional practice for me. It’s not something I can do now and then, when the spirit moves me or I’m in a meditation session. It’s something I absolutely positively must do all the time, in order to meet the most basic requirements in my life.

The beauty part is, because mindfulness is such a powerful practice outside of basic coping, it enables me to do the most basic things with tremendous focus and energy. Taking one small thing at a time, focusing fully on one moment at a time, allows me to use the full range of my abilities on that thing, in that moment.

And in so doing, my life becomes more than just a series of limitations to be dealt with. It becomes more than just a sequence of chores and tasks and obligations. It becomes more than work, work, and more work. My life — through mindfulness — becomes a form of worship. It becomes art.