The radical mindfulness of the everyday

Nothing special... or maybe it is?

Some time back, I heard someone speaking about having sustained a pretty serious head injury, which left them without any memory or any awareness of who they were for about 24 hours. They had a bad accident, which pretty much reconfigured their face, and left their brain blank, when it came to knowing who they were or what they were doing far from home with a bunch of other researchers.

They said that right after their accident, they had no idea what their name was, where they were, who they were with, or what they were doing there. They were on a research trip with a bunch of other scientists, and their job was to collect data. But after the accident, all that changed.

Their amnesia lasted about 24 hours, and then all of a sudden, they were back. They said they believed that the thing which brought them back was paying extremely close attention to every detail about their experience.

The air they breathed.

The food they ate.

The sounds they heard.

The feeling of their body.

Every sensation that they encountered, they focused in on it with their whole might.

And a day later, they were back.

What strikes me about that story — and the person who told it is a nationally recognized leader in their field with an avid following — is that they plunged full-on into their life experience after their brain injury. And decades later, they are a thought-leader in their chosen domain.

Now, who can say if their mindfulness was the thing that restored both their memory and their awareness of who they were, but they were convinced that this “extreme mindfulness” approach made all the difference for them.

And so am I. I’ve been thinking a lot about that story, since I first heard it several years ago, and I have been employing that approach more and more in my life. The principles behind it, as I think of them, are that when we engage our whole selves in our lives, noticing small details and really dwelling on our immediate experiences, we create new connections in our brains — new physical connections that really “fill in the blanks” for who we are. When we approach our lives as actively involved individuals, and we learn as we go (from trial and error, or just thinking things through very carefully ahead of time), we “build out” parts of our brains that may have been neglected before, or that may have gotten hurt in that accident. When we try new things, eat new foods, think new thoughts — and do it repeatedly — we lay in new connections that strengthen with repetition. We acclimate ourselves to the new life we have, and we find ourselves better and better able to function in this new way. (Or we discover that that new way really isn’t for us, and we go off to find another way.)

The process is gradual, but it can also jump us ahead in leaps and bounds, when we least expect it. That’s been my experience, anyway. But it’s a process. And my experience has been that it is cumulative and accumulative. It’s pretty cool.

The biggest threat to this process, from what I can see in my own life, is fear. Fear keeps us from engaging with our lives. It keeps us from getting involved. It keeps us at a “safe” distance, and it may make us feel smart (for detecting danger) or safe (for avoiding situations that we think are dangerous), but it doesn’t help our brains very much. If anything, it robs us of the chance to rebuild what we need to rebuild. It keeps us from building new connections, and it keeps us from developing as truly human beings. I know a number of people who are extremely fearful, and over the past several decades that I’ve known them, I’ve watched their lives become smaller and smaller, as my own has broadened. And it makes me sad to see it.

It’s also a good lesson for me. Every time I see them making choices that have to do with fear, instead of curiosity, I am reminded of the kind of life I do not want to have. And I start to make different choices of my own.

Now, fear can be a tricky thing. Some is good to have — fearless animals tend to be short-lived, and I want to live a long time. But having it run your life… that’s no good. And from personal experience — having had fear run my life for many, many years, when TBI-caused anxiety was wreaking havoc with my soul — I can say it’s no darned fun. And it keeps you from recovering what you need to get back.

Looking back at my life over the past 40+ years, I can see a direct correlation between the traumatic brain injuries/concussions I experienced, and a growing anxiety… which eventually built into a nasty case of post-traumatic stress. I was so wired all the time with anxiety and stress over constant fight-flight situations (that were induced by my TBI-related anxiety) that even though I wasn’t in immediate danger a lot of times, I felt like I was. I was often completely taken over by fear, which kept me from developing as a person and kept me from recovering from my injuries.

But since I’ve been actively dealing with the anxiety and agitation… and now that I understand the actual nature of my issues (they are neurological, not psycho-spiritual)… it’s taken the edge off my experience in ways that simply amaze me. And it makes it possible for me to engage fully with my life, day after day, as an actual human being, not a shell of the person I once was.

Active mindfulness is actually pretty radical, if you think about it. When I say “radical” I mean “Relating to or affecting the fundamental nature of something; far-reaching or thorough.” I mean, it turns me 180 degrees in a different direction from where I’m going when I’m stuck in fear. Diving into my life experiences, and not holding back because “there’s something wrong with me” has proven utterly transformational for my life, my relationships, my sense of self, and my sense of well-being.

And the weird thing is, even though to this day I don’t feel like I’m the person I used to be, and I have this nagging sense that something about me is “missing”… that doesn’t matter to me nearly as much as it used to. I can accept that I’ve changed, that my life has changed, that I’ve lost the things I’ve lost. Because now I realize that I’m actually gaining a lot of things I didn’t have before. I have a much deeper and higher-quality of everyday experience, each and every day. And I am involved in my life and my relationships and my work on a far deeper level than I can ever remember being, before I got help for my TBI issues. Life is a series of losses and gains, and when I can accept that and get on with the gaining, instead of getting stuck in the losses, that only helps.

Now, thinking about it, I am struck by how this approach — total, full-on engagement with the world around them — can compliment the directions we’re receiving from doctors and athletic trainers, to rest the brain completely while recovering from concussion.

I am NOT a doctor. Nor am I an athletic trainer. I have not received their level of education and training, and in no way can I compare myself to their expertise or even rival their formal knowledge. But I really believe, based on what I’ve read, that the concept of total rest after a brain injury is 100% right, and I often wonder what might have happened, had I actually taken the time to rest after my injuries, to give myself time to heal and give my brain a chance to sort itself out.

Now, each and every person is different. Each and every brain injury is different. There is so much we don’t know. And I don’t know any of the other details of this radically mindful post-TBI individual’s full experience that might shed light on why they came back from their amnesia so quickly, and why they lived out such a high-achieving life. What we do know is that there is still a whole lot of uncharted waters out there, when it comes to what-to-do-about-concussion/brain-injury, and we may just find different ways of approaching the injury, based on the individual and their own scenarios.

I really support the wisdom of pulling student athletes from play and keeping them out for extended periods of time. I also believe the science behind the biochemical cascade that happens when concussion takes place. And I only wish that the NFL and NHL and student sports leagues would pay attention to what we now know about concussion and traumatic brain injury, and take full responsibility for what their sponsored activities make possible — damaging, potentially catastrophic traumatic brain injury.

At the same time, I think that something more needs to follow the initial resting period. We need to manage concussions not only immediately after the injury, but over the long term. We need to find ways to help the injured — and that includes veterans returning with TBI, as well as countless other individuals who experience brain injury each year — re-engage fully with their lives, on a whole new level. Experiencing life as it comes up, learning to taste and feel and see and hear all that is around us, each and every day, can help the brain create whole new connections and pathways that “fill in the blanks” that TBI can leave. It might not fix the “busted parts” 100%, but it can create new parts and new connections, where none previously existed. And in the creation of these new parts, we can turn our minds from focusing on what we don’t have, to focusing on what we can have.

I hope that others who have been concussed or brain-injured can find this same kind of experience, that they can find ways to overcome the anxiety and agitation that wreak havoc with our minds and our brains and our spirits. And I hope the same for those who live with them and care for/about them. Beyond the initial recovery period, there is a whole world to discover out there — a world that I found severely limited by my rigid thinking and my inflexible attitudes, which were really cemented in place by anxiety and agitation.

Most of all, I hope that we can all keep open minds when it comes to what will work for individuals, that we can all learn about what has worked for people who have “been there”… and continue to look beyond the initial mechanics of concussion and traumatic brain injury, to seek out longer-term approaches to restoring life after TBI. Standard protocols of immediate response and treatment are very important, in my opinion. And so is innovation and an open mind — as well as a truly scientific approach that keeps the doors of the mind slightly ajar when it comes to alternatives and workable approaches.

In the end, we have to keep learning – fortunately, we’ve got tons of opportunity to do exactly that.

Another sort of amnesia

A really interesting thing has been happening with me, lately. It’s actually been unfolding over the past six months or so, when I think about it. More and more, I’m piecing scattered parts of myself back together. Most importantly, I’m becoming increasingly aware that there are pieces of myself I need to piece back together. I’m starting to remember things I used to love to do, things that used to be part of my everyday life, that I couldn’t do without… but suddenly became “pointless” after my last fall.

In particular, mindfulness and meditation are back. And I’m really focusing again on the re-development of the abilities and the interests that keep me focused, centered, and going strong. This return is big. It’s huge for me.

Now, it might not seem like that big of a deal. After all, everybody loses motivation, now and then. Everybody goes through ups and downs, shifting in and out of specific interests. Why get so worked up?

You have to understand — my shifting away from mindfulness and meditation wasn’t just a flight of fancy. It wasn’t just me getting distracted by other things and taking a break. When I got away from it, I not only got away from it, but I pretty much removed it wholesale from my life.

To understand the full impact of this, you have to comprehend what a significant part of my life mindfulness and meditation were, for many, many years. I had always been a thoughtful kid, growing up. Philosophical, even. I spent a great deal of time contemplating life and its deeper meanings, and I didn’t let the fact that I was young stop me from pondering age-old things. I would meditate on mountain vistas and campfires, commune with nature on solitary walks… be one with the universe while sitting and watching dust particles dance in a sunbeam.

In retrospect, I believe this tendency to contemplate and meditate arose naturally from my difficulties with everyday activities that other kids engaged in. I had trouble with my coordination — real balance problems, at times — and my senses were pretty sensitive when I was tired, which was a lot of the time. I never really fit in, like a lot of kids. But unlike other kids, who went out of their way to remold themselves to they could fit in better, I withdrew to a solitary, almost monk-like life of minding the smallest details of life and extracting meaning from them.

Into my adult life, too, I spent a tremendous amount of time contemplating and meditating, communing with the cosmos whenever I could. I found tremendous comfort in that, a sense of connection that eluded me in everyday life with other people. External situations that others found easy tended to baffle me, so I focused my energies on cultivating an inner life, an inner view of the world that was consistent with my heart and mind. I spent my free time reading and journaling and meditating and exploring spiritual matters. I wasn’t heavily invested in “the things of this world” because I had other interests in mind —  namely, my connection with that still small voice within.

It served me well, too. On the surface, spending a lot of time contemplating and meditating might seem like an interesting hobby, but what good would it really do a person in the real world?

Actually, it helped me tremendously, as I developed a practice I called “modified za-zen” where you maintain your mindful composure and presence of mind in the midst of chaos. It was a real “warrior stance” I took – being impassive and composed even in the face of full-on attack or a schedule packed full of highly stressful tasks. That practice enabled me to play a significant part in many heavy-duty projects at work, and it molded me into a truly competent team player who was a rock and a cornerstone of the groups I was with. It cultivated in me a presence of mind, a peace of mind, that was the envy of my spouse, my friends, my co-workers. Very little could ruffle my feathers, when I was in the zone. I wasn’t always in the zone, to be sure — I had various issues that would come up, no doubt related to my neurology, but that practice of mindful awareness and intentional composure made all the difference in some very tough situations.

After I fell in 2004, that changed.

Broken Bokeh by WatchinDworldGoBy

Suddenly, I couldn’t be bothered with that meditation stuff. And contemplation? Well, that just seemed like a huge waste of time. As for my composure at work and at home, well, who the hell cared about that anymore? I “decided” I was sick and tired of putting forth the effort to hold myself together. I “decided” it was high time that I had a break and stopped holding myself in check. There was a part of me that suddenly felt like making the effort to sustain my calm was stupid and weak. It just didn’t want to be bothered. It told me I was “choosing” to stop controlling my behavior and stop monitoring my moods and state of mind and actively managing them, but the truth be told, I just couldn’t. The part of me that had used to do that wasn’t working the way it used to. It couldn’t.

It was like the responsible, mature part of me that had good sense about keeping myself centered and sane had been shattered. And in its place I found a selfish, self-centered, self-pitying creature who had a hair-trigger temper and frankly didn’t give a damn what anybody had to say. If that part wanted to act out, it acted out, and it had the best of excuses for doing so. The part of me that had long been conscious of how vital it is to keep centered and calm and have mastery over my behavior, didn’t fully recover from that fall. It was like it got knocked out for a lot longer than my lights went dim, and while it was out, it got pushed out of the way by the other part of me that felt like any attempt at composure was cramping its style.

Whereas I had already spent many, many hours… indeed, many months of my life, if you add up all the hours together… cultivating an equanimity that was the envy of many friends and co-workers, starting at the very end of 2004 (I fell at Thanksgiving), I moved pretty rapidly away from that old practice of mine. And within a year’s time, I was in trouble. Deep doo-doo.

Of course, all this was pretty much invisible to me and my broken brain. I told myself, I had other things to do. I told myself, I had to focus on “real” things. I just let the meditation drop and walked away. And whenever some anger or frustration came up, instead of checking in with myself to see if there was any valid reason for me to act on it (there usually wasn’t), I indulged every one of my whims with a self-righteous self-justification that seemed perfectly logical to my broken brain, but logistically made no sense whatsoever.

The result? A lot of headaches at work, a lot of trouble at home, increasing money issues, relationship issues, and health issues. It just wasn’t good.

But all the while, as my struggles compounded, there was still that raging voice in me that was convinced it had every reason and right to accommodate every single negative impulse I had.  Seeing the connection between my feelings and my behavior and the consequences was next to impossible, in my diminished state. I had literally forgotten that it mattered, for me to get a grip.

Okay, enough background. The good news is, I’m coming back. Those old monitoring parts of me that I had worked so hard to cultivate, are coming back online. It’s more than just feeling better and more alert — I AM better and more alert. I’m able to wake up in the morning, I’m able to engage more fully throughout my days, I’m able to step back and take a look at my moods and my behavior and choose the sorts of responses that will work in my favor, not against me. I’m not just on this mad auto-pilot drive; I’m actually able to slow down and contemplate my life and find real meaning in it again.  I’m also able to relax — really relax. It’s pretty amazing.

And as the time passes, with each new success which I fully realize and appreciate, I build up my stores of lost self-regard, self-esteem, self-respect. I also build up my stores of self-control, and I can actually live without being right about everything, no matter what the costs to my relationships. I am better and better able to choose my responses, and even when people around me are acting up and seemingly going out of their way to provoke me, I’m able to pull back from the engagement, figure out what I want to do and say… and do it.

Yeah, it’s pretty amazing. What amazes me even more, is that I went for years without having this as a regular part of my life. It amazes me, I thought I could do without it.

So, I’m enjoying this. Thoroughly. I’m watching my life with a whole new interest, and I’m learning a lot. In a way, I feel as though I’m re-learning skills, like someone re-learns to read and write after a head injury. Like someone re-learns to walk and talk after a stroke. Like someone with amnesia who starts to remember their name, their family, their home, their work… Like someone who wasn’t even fully aware of having amnesia, who suddenly sees a world they once knew, and isn’t sure whether to be elated or dismayed. In truth, it’s a little bit of both. I’m elated that bits and pieces are coming back to me. But I’m also dismayed that I lost sight of them for so long.

It feels very odd to be writing this, and to be realizing it, but I guess I was a lot more impacted in some ways than I really realized. But now that I’ve “got” it, I can move forward. Progress is good.

What really piques my interest is thinking about what got me back on track. I think one of the big things that set it in motion, was taking care of my body — starting to exercise regularly, and waking myself up with exercise and stretching, rather than two strong cups of coffee. That, and stretching and consciously relaxing before I go to sleep at night.

I actually think that I developed a hefty dose of PTSD, in the aftermath. Not right away, not from the fall itself, but rather from the progression of small disasters — bite-size catastrophes — that have dogged me for years. The collapse of jobs, the dramas at home, the startling surprises that I didn’t see coming, the encounters that went poorly or that carried some sort of hurt with them… My sympathetic nervous system has been on high alert for quite some time, now, and it’s taken a toll.

But since I started making a point of caring for my parasympathetic nervous system — bit by bit, exercise by exercise, breath by breath — I have been able to feel a difference in my whole system. Sometimes it’s subtle. Sometimes it’s dramatic. But it’s there. Conscious breathing has played a significant role, of late.

It’s good to be getting back. I’ve been toughing it out just about all my life, but this past 5 years has kicked my butt, to the point where toughing it out is no longer the best solution I can think of. Now I have other ways of dealing with the crises and dramas — ways which involve really basic care of myself, basic care of my system, and attending to the details of my life with a much greater depth than I’ve been able to manage for a number of years.

But now I am remembering who and what I am. I am remembering what matters most to me. I am re-learning the wonder and magic of paying attention to little things, and seeking deeper meaning from my life than what the television has to offer. I am re-learning the discipline of just sitting and observing what’s going on around me, rather than diving in with the intention of “fixing” what isn’t mine to fix. I am re-learning the fine art of calm in the midst of storms, as well as making my way in the world in my own individual way.

I wish I could say it’s coming naturally to me. I used to be able to say that. I used to know it and feel it. I seem to recall that I used to not have to really work at it. But I’m not adverse to work, and if extra effort is required to get me back to a place where I can piece back my life into a state of quiet dignity and genuine happiness. then so be it.

One concussion, two concussions, three concussions, four…

I had a meeting with my neuropsych last week, when we talked about my concussive history. I had read the article by Malcom Gladwell in the New Yorker called Offensive Play, and I had some questions about how my past might have made me more susceptible to tbi, later in life.

I was wondering aloud if my rough-and-tumble childhood (when falling and hitting my head and getting up and getting back in the game ASAP were regular parts of play), might have brought me lots of subconcussive events, like so many impacts on the football field. I checked in with my neuropsych, and they had me recap from the top, all the head injuries I could recall. My recollection and understanding of them was considerably better than it was, just six months ago. What came out of it was the determination that I’d had enough genuine concussions to do a fair amount of damage to myself. Forget about subconcussive events; the concussive events sufficed to cause plenty of problems, on their own.

It kind of threw me off for a day or two, and I got pretty stressed out and ended up pushing myself too hard, and then melted down in the evening. Not good. It’s hard, to hear that you’re brain damaged. It’s not much fun, realizing — yet again — that you haven’t had “just” one concussion, but a slew of them. And considering that I’m in this new job where I have to perform at my best, it really got under my skin. It’s taken me a few days to catch up on my sleep and settle myself down, after the fact. But I’m getting there. My past hasn’t changed, nor has my history. I’m just reminded of it all over again…

All told, I’ve sustained about eight concussions (or concussive events) that I can remember. Possible signs of concussion (per the Mayo Clinic website) are:

• Confusion
• Amnesia
• Headache
• Dizziness
• Ringing in the ears
• Nausea or vomiting
• Slurred speech
• Fatigue

Some symptoms of concussions are not apparent until hours or days later. They include:

• Memory or concentration problems
• Sensitivity to light and noise
• Sleep disturbances
• Irritability
• Depression

I experienced most of these (except for nausea and vomiting, and not so much slurred speech, that I can remember) during my childhood and teen years. Not surprising, considering that I had a number of falls and accidents and sports injuries over the course of my childhood.

It’s pretty wild, really, how those experiences of my childhood contributed to my difficulties in adulthood — especially around TBI. I’ve been in accidents with other people who had the same experience I did, but didn’t have nearly the after-effects that I suffered. For them, the incident was a minor annoyance. For me, it was a life-changing concussion. A head injury. TBI. Brain damage. Geeze…

Thinking back on the course of my life, beyond my experiences with the accidents that didn’t phaze others but totally knocked me for a loop, I can see how the after-effects like fatigue and sensitivity to light and noise, really contributed to my difficulties in life. It’s hard to be social and develop socially, when you can’t stand being around noisy peers (and who is as noisy as a gaggle of teens?). It’s hard to learn to forge friendships with girls — who always seemed so LOUD to me(!) — or hang with the guys — who were always making loud noises, like blowing things up and breaking stuff — when you can’t tolerate loudness.

And when you don’t have the stamina to stay out all night… It’s a wonder I did as well as I did, as a kid. Of course, I was always up for trying to keep up – I was always game. And I wanted so very, very badly to participate, to not get left behind, to be part of something… That kept me going. I was just lucky to have people around me who were kind-hearted and intelligent and tolerant of my faults and limitations.

Anyway, I did survive, and I did make it through the concussions of my childhood. I have even made it through the concussions of my adulthood.  And I’m still standing. I didn’t get any medical treatment for any of these events, and the most help I ever got was being pulled from the games where I was obviously worse off after my fall or the hard tackle, than I’d been before.

But one thing still bugs me, and it’s been on my mind. During my high school sports “career, ” I was a varsity letter-winning athlete who started winning awards my freshman year. I was a kick-ass runner, and I won lots of trophies. I also threw javelin in track, and by senior year, I was good enough to place first and win a blue ribbon in the Junior Olympics. Which is great! I still have the blue ribbon to prove it, complete with my distance and the date. But I have no recollection of actually being awarded the ribbon, and I barely remember the throw. I’m not even sure I can remember the event or the throw. It’s just not there. It’s gone. And it’s not coming back. Because it was probably never firmly etched in my memory to ever be retreivable.

I’ve never thought of myself as an amnesiac, but when it comes to my illustrious high school sports career, when I was a team captain and I led my teams to win after win, I have all these ribbons and medals and trophies, but almost no memory of having earned them.

Which really bums me out. What a loss that is. When I hear Bruce Springsteen’s song “Glory Days” I feel a tinge of jealousy that the guy he’s singing about can actually recall his glory days. I can’t. And that’s a loss I deeply feel, mourn… and resent. Seriously. It sucks.

This could seriously mess with my head. And sometimes it does. But on the “up” side, it might also possibly explain why I’ve been such a solid performer over the years, in so many areas, yet I can’t seem to get it into my head that I am a solid performer. My memory of having done the things I did, in the way I did them, is piecemeal at best, and utterly lacking at worst. So, even if I did do  well, how would I know it, months and years on down the line? How would I manage to form a concept of myself as successful and good and productive and inventive and trustworthy, if I have little or no recollection of having been that way in the past?

It’s a conundrum.

But I think I have an answer — keeping a journal. Keeping a record of my days, as they happen, and really getting into reliving my experiences, while they are still fresh in my mind. If I can sit down with myself at the end of a day or a week, and recap not only the events of the past hours and days, but also re-experience the successes and challenges I encountered, then I might be able to forge memories that will stay with me over time. If nothing else, at least I’ll be making a record for myself that I can look back to later. And I need to use colors to call out the good and the not-so-good, so I can easily refer back to the date and see where I had successes and failures along the way.

Most important, is my recording of successes. I’m so quick to second-guess myself and assume that I don’t know what the hell I’m doing. And when I think back to the times when I overcame significant difficulties, I often lose track of the memory before I get to the end of the sequence I followed to succeed.

But I cannot let that situation persist. I need a strategy and a practice to reclaim my life from the after-effects of way too many concussions. I’m sure there are others in life who have had it far worse than me, but some of my  most valuable and possibly most treasured experiences are lost to me for all time, because I have no recollection of them.

No wonder my parents often start a conversation with me with the sentence, “Do you remember ________?”

Crossing the river(s) when the bridge is washed out

I’ve been thinking a lot about how my brain developed over the course of my life, wondering if/how my early mtbi’s affected me.

I have to say, it’s a bit confounding. It’s hard to see where the differences between me and everybody else are just regular personality differences, and which ones could be related to my falls and accidents and the assault when I was eight. I’ve actually remembered more incidents, over the past few months, most notably an incident when I was in daycare as (I believe) a 4-year-old.

I don’t remember much — just climbing up some stairs when some of the older kids encouraged me to come play… then running and jumping a lot… and then lying on the ground, looking up at an older kid looking down at me… and one of the other kids running downstairs to tell the lady who watched us all that something was wrong… the lady coming at me, looming over me, checking me over… yelling at the big kids… lots and lots of yelling. I’m not sure if my parents ever found out that something happened, but I remember trying to get upstairs a few more times, but the lady who ran the place wouldn’t let me, which really made me mad! It was fun playing with the big kids. I didn’t want to be stuck downstairs with the “little peepies”. I wanted to run around and play with the big kids.

I think that I may have been kept downstairs because I was small for my age. A couple of my younger siblings were actually bigger than me, till I was about 12 years old and I started to grow. I was a little kid, so I think the lady who kept me probably told me to stay downstairs so I would be safe.

Clearly, that didn’t work. If memory serves — and there’s the distinct possibility that it doesn’t. At least, in this case. I was reading a book, lately, about how the brain doesn’t always store the information it’s exposed to. It’s not like a tape recorder or digicam. It doesn’t just take in everything it’s shown. And sometimes it “records” things that never happened. So, I could be wrong about this — yet more fiction about my life…

But I’ve felt for a long, long time that something bad happened to me when I was little — in day care — and I always had this faint memory lurking in the back of my mind. It’s always just been there, I just never paid any attention to it. But then, the other week, all of a sudden, I got this big Wham! of a hit of the sequence of events. Like all of a sudden, they “clicked” with me, and I could see it all happening in front of me, like it was yesterday.

Hmmmm…

I also remember falling down the stairs more than once when I was a kid — one time in particular, I went down and slid the whole way down the carpeted stairs, banging my head on them, one at a time. Similar to my fall in 2004, which anniversary is coming up soon, but when I was little, I hit just about all the stairs on my way down. I can still remember the feeling of my head bouncing off the stairs — bang-bang-bang-bang-bang-bang-bang-bang-bang-bang — and the dull fog that enveloped me when I got to the bottom.

Man, oh, man…

Well, anyway, I know that I have a long history of head traumas — plenty of them subconcussive, as I was a very rambunctious kid with a lot of energy but not quite as much balance… I was always biting off more than I could chew, energy and coordination-wise. So, I fell down a lot, hit my head a lot, ran into things a lot. I got banged up, bounced back up, and got back in the game. I was game. Totally. Always up for more. Just try and hold me back…

Sometimes, people were able to, like the lady who watched me when I was little. But most of the time, they weren’t.

I showed them. I could do it. I’d be up and at ’em in no time. Sure! I could do it!

Now, I’m dealing with the after-effects of my (sub)concussive childhood. And I’m wondering if the impacts over the years had a lot to do with how my brain developed. I have to say, although I have some complaints (who doesn’t, tho?) I’m pretty pleased with how flexible my thinking is, and how well I can perform, by and large. I tested very high in my neuropsych evaluation – high 90’s, percentile-wise. In my moments of self-satisfaction, I imagine I’m a genius or a savant of some kind. (Ha – yeah, right – when I figure out how to keep my study clean and get stuff done when I’m supposed to and make it to the train on time, then I’ll qualify). I have to say, though, I don’t have that many of those kinds of self-satisfied, self-congratulatory moments (I should be so lucky), so I try to savor the ones I have.

But anyway, back to the washed out bridge thing. I’ve heard head injury described as a shearing of fragile connections in the brain — the fine connectors get disconnected, sheared, frayed, and generally disrupted. Kind of like the frayed strings in my sweatpants when I was a kid and I wore my sweats to shreds. And the routes that normally connect the different parts of the brain end up having to re-route to find other ways to connect. And that’s where the fatigue comes from. And the constant restlessness. And the agitation. The brain has to work all the harder to do basic, regular stuff. It can do it, it just takes more effort. The ways that are usually used, the pathways that everybody else seems to have intact, don’t quite work the same for us.

So, we mtbi survivors have to find other ways to get down the neural pathways of our lives. We have to find other routes, when the highways and byways of our brains are washed out by the storms that take us by surprise. The traffic of our brains doesn’t stop — not as long as there is life in us. It just keeps coming and coming and going and going, and when it comes to a place in the road where a bridge used to be, or a paved portion is mising from a huge-ass virtual sinkhole that opened up under it, or there’s a huge fallen tree getting in the way, we — the traffic in our brains — have to find a different way of getting where we need to go.

And I think about all the times when I was a kid, feeling like I was so far behind, just struggling to keep up with what was going on around me, hassling and hassling and hassling over every little detail… all the while seeming to be fine, because I learned pretty early on to be stoic and not let on when I was having trouble — and anyway, I was a tough little kid who didn’t take shit from anyone — and I think about my brain and how hard it was working to put two and two together…

Man, I have to hand it to myself for not going crazy. Granted, I was a strange kid who went off on horrible tantrums, beat up on my siblings, and had all sorts of weird habits, like rubbing through the satin edge of my blanket because the feel of the satin between my fingers was the only thing that would calm me down enough at night to get to sleep… I won’t go into the hiding in dark corners and talking to myself for hours on end and tearing out clumps of my hair — that’s a tale for another time. But all that disturbance aside, I actually came out okay. And nobody I know seems to have noticed there was something really amiss with me.

Of course they didn’t. I learned a long time ago, to hide what goes in with me. In fact, it wasn’t until I realized I was several hundred thousand dollars poorer than I’d been three years before, and I couldn’t explain to myself exactly why or how or when that had happened, that I noticed there was something amiss with me.

Crazy.

Anyway, something must have worked, because here I am, relatively normal, as far as anyone else can tell, testing well, for the most part, in my evaluations, and able to hold down a job and advance my career. Maybe I’m just fooling myself and I’m in for a rude awakening, when I find out that I’m not nearly as competent as everyone else seems to think I am. Maybe I’ll crash and burn. Maybe I’ll self-destruct. I don’t plan to, and I don’t think I will, but you never know.

All I know is, all these years, whether because I’ve kept busy or just kept moving, I’ve been able to re-route my brain around lots of obstacles, and find other ways of getting where I need to go. I may have had all those falls and all those injuries, but if anyone is a testament to neuroplasticity, I am. I’m serious. All the crap that’s gone down in my life, and miraculously my brain has managed to adapt, grow, change, and not show up horribly deformed on my MRI or register more than slight abnormalities on my EEG. For all I’ve been through, for all the crap that’s been done to me, and the wrecks I’ve survived, I’m doing okay.

Even if the bridge is washed out in places, there’s plenty of territory to discover while I’m bushwhacking my way through the underbrush. And if I’ve learned anything from this life, it’s that if you just keep going and use your good sense and you don’t go out of your way to do genuinely stupid stuff, you can find your way back to a beaten path of some kind. It might not be the road you left, and it might not be the road you were looking for. But sometimes a detour is the best thing for us.

Just keep going.

Using my physical memory

I have been working on a new technique for remembering hard-to-recall things that I have to do. I’m notorious for completely spacing out on stuff that I can’t afford to forget. People tell me that your memory gets worse as you age, but I’ve been this way since my 20’s, and I noticed a real dip in my ability to remember important things after my fall in 2004.

Over time, and after many harrowing experiences of remembering that I’ve forgotten important things (like mailing out bill payments on time, taking the lunch I made and packed the night before when I went off to work, and my wallet, cell phone, and/or keys), I’ve developed a technique for remembering important things I can’t afford to forget.

Basically, where my brain falls down, I let my body fill in. I actually use “physical memory” to keep myself on track, by deliberately having an “advance memory experience” in advance. I use my imagination to experience the act of remembering before the time when I’m  supposed to remember. And I rely heavily on my use of daily routine to cement this technique in place.

Here’s how it works:

Say I must remember to mail out my mother’s birthday card the next morning. I have forgotten to send her a card for the past three years in a row, and I can’t afford to miss another year.

This year, I have actually remembered her birthtday, and I have her card signed and addressed and stamped and lying on the kitchen counter in plain view, waiting for me to mail it out in the morning.

Now, I know for a fact that having something in plain view is no guarantee that I’ll actually see it. I might get busy the next day and overlook it.  Should I put it in my daily minder, so I see it when I work through my schedule the following day? Not necessarily. Many days can pass me by without my ever cracking my daily minder. I have to have the card out where I can see it, so I can put it in the mailbox on my way to work.

In order to remember to pick up the card and take it with me, the night before, I envision myself getting ready for work and remembering to get her card. I see myself going through my regular routine — putting my supplies together in my knapsack (laptop, daily minder, phone, wallet, etc), and putting on my coat.

As I see myself doing this, I imagine what it’s like to do all this. I don’t just imagine what it looks like, I imagine how it feels. I actually feel the experience ahead of time — I imagine the feel of my bag in my hand, the heaviness of it, the weight of my coat on my shoulders, and how I always have to shrug my shoulders a few times to set my coat right. I experience myself thinking through all the stuff I need to take with me, and I imagine myself checking the contents of my knapsack, as I always do each morning.

As I’m “experiencing” myself doing this, I imagine myself remembering, “Oh – Mom’s card!” I see and feel myself remembering to get the card from the counter and put it in plain view to take with me. I imagine myself flooded with a sense of relief that I’ve remembered to get it, as I get the card from the counter and put it beside my bag, then pick it up and carry it out the door with me. And I see and feel myself walking out to the street, putting it in the mailbox, and then going back to my car to drive to work.

As a back-up, in case I don’t follow the same old routine I usually do, or I’m rushed and don’t get the chance to collect myself, or I don’t wear my coat, I imagine myself unlocking the door as I head out to my car to go to work. I imagine the feel of my hand on the lock, and on the doorknob, and as I feel myself turning the doorknob, I see and feel myself remembering — Mom’s Card! I feel the rush of relief that I get when I remember something I don’t dare forget. And I feel that sense of gratitude for what memory I do have.

This generally works with me. I usually have at least one back-up “advance experiences” that I go through ahead of time. I try to supply as much physical experience as I can think of — the feel of my clothing, the weight of my bag, etc — so that I have “sensory hooks” to anchor the things I am trying to remember.

Basically, I set up the experience I want to have before I have it. And it’s the experience of remembering what I almost forgot, that’s important to me. It’s a very emotionally laden experience, remembering something at the last minute, and it always makes a strong impact. So, by having that experience in advance and planning/expecting to have the experience of remembering, and using my body’s sensations to “anchor” the experience before I have it, I’m able to boost my brain’s capacity with my body’s abilities.

Try it sometime – it might work for you, too.