Thank you. All of you. For your support.

thank-youI’ve been doing a retrospective review of all the comments and feedback I’ve gotten over the years at this blog.

I started writing here in late 2007, after I realized what a huge role TBI had played in my life, how much it had cost me, and how it had influenced me — not for the better. I had been so confused and lost and turned around for so long, and I hated to think that others had the same experience as I.

I needed to do something about that.

I decided to put together a resource for others like me, who were struggling with hidden brain injury issues that no one seemed to understand, and who couldn’t get access to reliable medical and rehab care. I wanted to share what I’d found and provide some insight (and possibly answers) to folks who were struggling and needed to know some key things. I also wanted people to know that recovery from traumatic brain injury is possible, and that it isn’t the end.

At the start, the blog was a bit “clunky”. I was sort of a mess, to tell the truth. But I figured it made sense to just show it all, because that’s what happens sometimes with TBI. And my own experiences and ramblings might strike a chord with others who shared those same feelings.

As it turned out, it was the right thing to do. This blog has played an enormous role in my recovery, and so have all of you who have commented, offered feedback, called me on my B.S., and kept me honest. Seeing the readership numbers each day — even if it’s just a few — has really spurred my motivation. And hearing that what I’ve written echoes what others experience (and often cannot put into words), is a balm to my frazzled nerves.

I believe that each and every one of us has our own set of challenges. We never know what others are going through, although it may be very similar to what we’re experiencing. The world doesn’t always tolerate vulnerability, and so often we’re all expected to just “suck it up” and keep going.

I do believe that sucking it up is important. I, for one, can’t sit and stew in my own crap, day in and day out. I’ve got to keep moving, keep making progress, and I must never give in and give up. At the same time, we do need to have our pain recognized, our struggles identified, and our strengths validated. It’s all a process — and an important one at that. So this blog has enabled me to do a lot of that exploring, without having the rest of my life trashed by emotional lability and psychological dramas.

So, yes. This place has been a sort of refuge for me. And the folks who have joined me here have been most welcome and appreciated.

For all you say, for all you write, and even for all you think — even if you never write it down — thank you.

 

 

TBI Questions – And A Few Possible Answers

utah-mountainI’m up at my regular time — an hour earlier than I intended to be. But wonder of wonders, we’ve all moved our clocks up, so I’m actually up at a “normal” time, for once. That’s a relief. Maybe my body is naturally adjusting to the daylight — it’s just the rest of the world that’s behind. Until this morning, that is.

I’m feeling much better than I did yesterday. It’s taken about a day to rebound from that case of “MRI flu“, and today I have a ton more energy — and better balance. That helps.

For Brain Injury Awareness Month, I’m posting some more responses to some search terms that brought people to this blog. Here are 5 that I just gleaned from my stats of the past week:

  • after head injury i cant spell — I hate when that happens. Problems with reading and writing have happened to me several times, and I still have troubles with it, now and then. In 1996, I was in a car accident — it was a 7-car chain-reaction collision, where a whole bunch of us rear-ended each other. After that, I could not read. The words did not make any sense to me. I read them and I knew that I probably knew what they meant, but I could not make sense of them. Some of the words I could not make sense of at all — they were just these jumbles of letters on the page, and parts of the words got switched around. As for spelling, after my fall in 2004, my once-stellar spelling became really unreliable. I got words turned around, I couldn’t seem to spell words that I knew I knew how to spell, and I was really slowed down, so it took me a while to figure out that I’d screwed up. Also, lately, the strangest thing has happened to me — when I am writing in longhand (not typing), I will actually “skip” letters in words. I will literally leave a space for the letter, but not write it. So, The weather is beautiful today gets written as The weat_er is bea_tiful today. I’ll go back and fill in the blanks, but it’s the weirdest thing, that my brain knows to leave a blank, while writing. It’s like it can’t think of the letter at that split-second, so it leaves a blank for me to fill in later when I figure it out. It doesn’t happen all the time, and it usually happens when I am rushed — or I am “in the groove” and writing along at a brisk clip. I believe it’s been a gradual thing, as I notice it much more now, than I did before. It’s become more bothersome, that’s for sure. But at least my brain leaves a space for it to fill in later.
  • feeling good of being your old self again — I hope whoever searched on this did so because they were feeling good. This is so important for TBI survivors, and it’s a hard-won battle, that’s for sure. Not feeling like your old self is not a small thing. It’s a huge deal, and we go to great lengths to feel like ourselves again – even when those lengths are dangerous and put us in precarious positions. Some people believe that risk-taking behavior is only about not valuing yourself and being self-destructive, but in fact, it’s also about getting back to feeling like yourself. Sometimes, danger and duress are the only things that make us feel calm and centered and “like our old selves”. Not realizing this, is a huge barrier between TBI and recovery. Because after brain injury, while we’re struggling to get back to being ourselves, we can do things that actually injure us again. It’s not just poor judgment — it’s also our systems trying to right themselves. Finding out how to safely get back to feeling like your old self… that should be our top priority after TBI. It’s important. Probably the most important piece of TBI recovery of all. Unless we’re safe and feeling comfortable in our skins, we still run the risk of injuring ourselves. Again.
  • i hit my head last week now i can’t sleep — Welcome to the club. When I fell in 2004, I couldn’t sleep past 3 a.m., and I was just hell on wheels. Lack of sleep made everything worse. My moods, my anger/rage, my ability to focus, my attention (or lack thereof), my memory… everything. And that turned me into a crazy person. I still struggle with getting adequate sleep. I’ve been struggling with it for some weeks, now. The more tired I get, the harder it is for me to sleep, because I rely on adrenaline to wake myself up and keep myself going. Adrenaline (and all the other stress hormones) do a number on you, and that makes it even harder for me to sleep. What’s worked for me? Getting on a schedule and taking some time before I go to sleep, to settle down and relax. I meditate, I sometimes pray, I sometimes have conversations in my head with trusted confidantes who understand my situation. And I just let myself relax — because relaxing can be (almost) as rejuvenating as sleep. If I can’t do one, I might as well do the other. The important thing is to give my body and brain a break from all the hyper-activity of each day.
  • my doctor won’t write script for dti mri for my brain – That’s a pity. I suspect that doctor is not up on their latest research, or they don’t know how to read and interpret a DTI MRI), because the neurologist I went to see (who is actually a really well-known expert in concussion – especially sports concussion) told me that regular MRIs don’t really show what they need to know about how my brain has been impacted by all those concussions. In the case of the person who searched on this, it could be that there just isn’t any equipment nearby that will do the job. Apparently, you need a special MRI machine to do it, so maybe there’s not one nearby. In that case, it might be worth traveling a bit to find a place / doctor that will make the proper arrangements. If you can’t get what you need from the doctor you’re seeing, then you need to find other ways to get what you need. Especially with brain injury, where there are so many inconsistencies in treatment approaches and medical knowledge among professionals — and new information is continually coming out — it’s important to be your own advocate and keep going till you get the help you need. Of course, it’s difficult as a TBI survivor, but learning to do so can be a powerful part of your recovery, so keep at it, and don’t give up.
  • can the brain repair itself – Yes. Yes, it can. It does it all the time. Science used to believe (and tell us) that the brain cannot repair itself, and that once you’ve lost certain functionality, that’s it. It’s not coming back. We now know that’s ridiculous. The brain may be damaged in some ways, but it can recruit different parts to pick up where the injured parts left off. We now know that networks, rather than only specific areas, play a significant role in doing what the brain does. This is such an important subject. I wish that people would just stop with the “once it’s gone, it’s gone” talk, and just face up to the reality that the brain can — and does — repair itself.

 

 

Gist reasoning – The most invisible loss of mild TBI

catching-up-6I am thinking a lot about losses, these days. Loss of friends, loss of doctors, loss of family, loss of jobs, loss of money, loss of hope.

I’ve been actively working on my brain injury recovery since 2007 — nearly 10 years. I got hurt at the end of 2004, so it’s been over 11 years since my last TBI. And my expectations and hopes have varied, during that time.

I always expected to be able to build back my abilities to at least some extent. I expected to be able to be able to retrain my brain to build back my memory, to address my distractability, to handle my fatigue, and basically all-round get myself back to where I wanted to be.

But that hasn’t happened. The one area where I have significantly improved, is in my gist reasoning, which is really the biggest “functional” deficit I had. Not being able to see what ideas are important in a sea of details is one of the most debilitating effects after mild TBI. It’s also a better predictor of how well people “deal” after mild TBI.

Even if we look great on other scores, even if we only have a few measurable deficits, if our gist reasoning is not great, we’re far more likely to suffer and stumble and have troubles. Nothing seems to make sense. Nothing seems to fit together. And we make one mistake after another, miscalculating and mis-reading cues in ways that really make our lives (and others’) very difficult.

And for no apparent reason.

It’s a hidden thing. And it’s a real problem. On top of that, it’s not recognized as “a thing” by a lot of folks. One refrain I’ve heard repeated, over and over from my neuropsych, is that I only have a few measurable deficits, and they aren’t even that terrible, so I should be able to get back to my life without too much struggle. It’s been kind of demoralizing, hearing that each week, as things just didn’t seem to fit together for me. Yes, my tests said that I was supposed to be in good shape — better than I felt I was. Yes, my tests said I have just a few deficits. But nothing made any sense.

It just didn’t make any sense at all. And it’s been constant work for me to get myself to a point where A) I don’t feel stupid and lazy and useless, and B) I actually understand the nature of my issues and can deal effectively with them. I’ve worked at it, I’ve really concentrated on it, and I’ve made some pretty amazing progress, actually. Even more than my neuropsych ever expected.

The thing of it is, if I’d listened to them and just and said to myself, “Well, my measurable deficits really aren’t that many, and relatively speaking, I haven’t been impacted nearly as badly as other people have,” I might have just sat back and not worried about it… and kept screwing up. I probably never would have made this much progress. I wouldn’t have had a need to. I could have just scaled back my discontent and kept my sights lowered, and eventually just settled in to working around the specific problems I had.

But a focus on the specific problems is a huge problem — especially with gist reasoning. It completely misses the point. Gist reasoning is about bringing everything together to sort through it and make sense of it, and if you just think about (and disregard) the smaller pieces, it’s not going to help you build overall strength in your gist reasoning.

So, just looking at my handful of small deficits wouldn’t have helped me at all. At the same time, sitting back and saying, “Well, I’m not nearly as bad-off a other people are, so I should just get on with my life and not worry about it,” would have put the kaibosh on my progress. Because in fact it’s the combination of taking those small things seriously and tweaking them — within the context of my overall functionality — that kept me going over the years.

And it still does.

Now I am changing neuropsychs, and it will be interesting to see how they approach things. I’m a lot less concerned than I was before, because I’ve been thinking about all the ways my old neuropsych was wrong, over the years. I’ve always felt that dealing with their wrong-ness was even more helpful than dealing with how they were right. It’s been an important process for me, to really think through what they’ve told me, and decide for myself if they were right or wrong. And the times when they were wrong – oh, so wrong – have been pretty educational for me.

So, yes, they can go, now. Sure, I’ll miss them. But it’s not the end of my world – it’s the end of one part of it, and the beginning of another.

Onward.

Brain injury… mind injury

flowers-for-algernon-quote
The final passage from “Flowers for Algernon”

It’s a gray, rainy day today.

Thank heavens for that. It gives me a reason to stay in, lay low, do some reading, write a little bit, and think things through.

Yesterday was a tough day for me – an emotional roller coaster that’s still kind of throwing me off. My spelling is not great – I keep skipping words I should be typing. I hate it when get emotional and bent out of shape over every little thing, and yesterday I was in fine form. Fortunately, I didn’t take it out on my spouse. It was more about weeping quietly at odd times of the day, trying to collect myself, and doing a so-so job.

Transitioning to a new neurologist, a new neuropsych, and navigating everything is proving more difficult than I expected. It challenges my recovery at the most fundamental level, and it’s hard for me to feel strong and with-it, when I’m struggling to collect my thoughts and put them into words with completely new people.

It’s not that they’re bad or incapable people. Both the new neuro and neuropsych (NP) seem very capable, and they both come highly recommended. It’s just that they’re new, and making transitions has never been easy for me. You’d think by now I was used to it, but to be perfectly honest, I’m struggling with this one.

It usually takes me day for my reactions to sink in, after an event. So, yesterday was a difficult one, because it had the double-whammy of meeting the new NP and talking through some details of the past 8 years with my current NP, and discussing my impressions of the new one with the old one. The new NP is incredibly smart — and talks incredibly fast — so fast, I had a hard time keeping up, and ended up fudging my way through the conversation. And then when I sat down to talk to my old NP, I couldn’t seem to come up with anything substantive to say about my impression of them on the spot.

It takes longer than that with me. I need a day or two to let it all sink in, because there’s a flood of information I’m taking in, and it takes a while to convert all that to words.

Which just left me feeling slow and stupid. It still brings tears to my eyes, when I think about how I used to be able to just jump right in and give my two cents on the spot. My brain doesn’t work like that, anymore, and it’s a crushing loss. I used to be really quick and smart that way, and now I just feel like the world is passing me by, and I’m too slow to realize it.

Which is why I tend to pull back from the world around me. It’s just so disheartening and demoralizing to be this slow — and know it. It would be one thing, if I were always this way. But it wasn’t always like this. And how strange it is, to realize your abilities are not what they used to be.

In a way, it was easier for me, when I didn’t know that I was slower than I thought I was. It was easier to react, when I didn’t realize that I wasn’t following to conversation, that I was getting lost and missing important pieces, that I was just fudging my way through. Then, I could just skate right along, as though all were well, and while I knew something was “off”, I had no awareness that it was related to my brain.

So, the past eight years have seen a huge amount of change with me, and a lot of that is due to the fact that I’ve had access to another person’s mind to help orient me and keep me honest. Many of those years, I spent in a state of high alert and concern over how much I was struggling with interacting with them. They didn’t know, because I kept it to myself. The last few years have seen a huge leap in improvement, so I’ve been on more solid ground. And I’ve done a better job of interacting — in no small part because I’ve learned how to interact with them. And as I’ve said before, connection is a huge part of TBI recovery.

Now a major source of connection is going away for me, and it’s a loss. I’m losing a key connection – just as if I were losing someone very close to me. It’s a kind of death, really, because the person I am when I’m talking to them, will never exist again. The people in our lives, the parts of our lives, are all part of who we are. They help make us who we are. And when they go away, those circumstances can never be fully replaced.

That part of us is going away. That piece of us — which may have been so essential — is disappearing. And it’s not coming back.

It’s like I’m losing a part of my mind. Our minds are shaped and molded and informed by those around us. Near and far, close friends and strangers, our social connections help create our personalities. They teach us ways to live. They shape our minds. They become our extended minds. So, losing someone so important, is more than a social loss. It’s more than a personal loss. It’s a functional loss.

And I hate this shit. It’s like standing by helplessly as I lose a part of my little finger. That little finger is not my whole hand. It’s just one part, and I can probably function quite adequately without part of it. But it throws me off. And in fact, my hand will never be whole again. Not like it was before. Sure, I’ll learn to adapt. I’ll adjust. I’ll get to know this new neuropsych, and we’ll do good work together, I’m sure.

But the one constant, stabilizing presence in my life — who doesn’t look at me like I have two heads when I’m having a bad day… who doesn’t talk to me like I’m an idiot… who talks slowly enough for me to follow, and repeats what they say when I need them to… good-bye. And good luck.

Well, this happens. People come and go from my life on a regular basis, but this working relationship has been the most stable and reliable one in my entire life. Even moreso in some ways than my 25-year marriage, which has had its ups and downs and hasn’t always been very stable. And to be honest, my spouse doesn’t have the information or the temperament to just deal with me, like my NP has.

Not that it’s been all peachy-keen, of course. Many’s the time, when I wanted to terminate. And in fact I was considering terminating at the end of last year. But now I realize just how important those weekly sessions have been for me. And I don’t want to lose them.

But lose them, I will. I must. In a way, it’s a requirement for me to move on. It’s like the Cosmos is telling me that I need to change and grow and shift my work in a different direction. Yes, this NP has been hugely helpful to me. But there’s something else out there for me… and that’s where I need to turn my attention.

So, for the next five weeks, I’ll be winding down and gearing up for this new neuropsych. And I’m trying to figure out how to work best with them, because their style is very, very different, and it’s going to be a challenge for me. But a good challenge, I think. Actually talking to people who go at a regular pace — even faster than normal. And learning how to tell them to slow down.

Well, this will be good practice for me.

Right now, though, I have a headache and need drink a bunch of water.

I’m sure I’ll figure something out.

Onward.

Getting it all sorted – and having fun in the process

microscope-at-tableThis past weekend, I didn’t get much done that I’d intended to. Including my day off on  Friday, I had four days to really dig in with some of the reading and writing I’ve been doing, and I was hoping to make some progress on a project I’ve been thinking about.

But Friday I met with my neuropsych to talk about the new providers they’re connecting me with. It was nice to just have the day, so I wasn’t racing to their office from my office, and then fiddling with my smartphone to answer emails from work. Then I met my spouse at their doctor’s office, and we reviewed the test results they got back. Their numbers were not where they were supposed to be, and that really worried us all. But now there’s a plan in place, my spouse is getting their act in gear and taking responsibility, and as a result of this “mini-scare”, they are making some choices about who NOT to work with.

That’s a positive step in the right direction. They’ve always had a bad habit of joining forces with shady types… people on the margins… outlaws of sorts… so they could produce events — workshops, concerts, gatherings. Alternative community, and all that. The only problem is, the alternative community scene that I’ve been observing over the past 20 years has a lot of people in it who struggle with mental health issues, but never seek formal help for those issues. So, there’s all sorts of behavioral “anomalies” that crop up — questionable behavior, controlled substance abuse, conflict that seems like it’s a case of multipersonality disorder or bipolar or schizophrenia, not to mention a fair amount of borderline criminality that just barely qualifies as legal. I was a part of that world, too, until I got into my TBI recovery. Once I started managing my neuro-cognitive-behavioral issues with both feet planted in reality, things started to clear up. But that’s not happening with my spouse or the crowd they work with.

So, that’s an ongoing cause for concern.

But my spouse realizes that being sucked into that world is wreaking havoc with their health, so they’re cutting ties with a number of folks who have been behaving in ways that aggravate my spouse’s chronic health issues.

So, that’s a new cause for hope.

But it still took up the vast majority of my time on Friday — and over the extended weekend.

On Saturday morning, I was hoping to get some good drafting done on an ongoing project. There was a chance I could even get it done (it’s not big). I did some more research into the persistence of post-concussion symptoms and the preventability of PCS, and as often happens, I found new threads of inquiry that I just couldn’t resist following. So, I got pulled off in a number of different directions that distracted me from my primary topic. That trend continued until yesterday evening. Three days now in my rear-view mirror that turned out unlike what I’d planned/expected.

One of the things that distracted me was Twitter. There is some serious scientific goodness posted there, as well as some compelling debates unfolding. The tone of discussions were bothering me, so I un-followed a handful of people who have just been complaining and sniping and taking pot shots at others. My feed immediately improved. No more cringeing when I logged in. That’s a plus.

I also realized that I can’t really dispense with Twitter, because as an outsider to the scientific and academic fields, it’s the one place I can actually keep up on research that’s coming out relative to my own interests. Twitter has really opened up a lot of ideas for me — some of them filling in gaps that had been, well, gaping for a number of years.  So, yeah… I won’t be dispensing with Twitter anytime soon. Even if they do change the feed to relevancy-related, instead of sorted by time. It just gives me too much access to stuff I’d never otherwise encounter.

I really shouldn’t be surprised that I veered off course, almost from the start of Saturday.  I am so focused on my schedule all work-week long, that by the time Saturday rolls around, I can’t be kept on the leash anymore. I need to move at my own pace. I need to be free to roam around and take the pressure off. I need to just let my mind think — not toe the line. As much as I like the idea of being ultra-streamlined-productive on my weekends and getting things done, the simple fact is, I need the time off to just let my mind relax and unwind.

And in the process of relaxing, amazing things happen.

That “open space” in my mind gives my organizing mind a much-needed opening to “what else is out there”. I get to play… with ideas… with concepts. I can let my mind stretch its proverbial legs and wander about and come up with entirely new (for me) concepts and approaches. It’s the kind of leeway I don’t get during the work week, when I have to keep on my schedule, and I’m so tightly wound, it’s crazy. When I loosen up and don’t put any pressure on myself to Think Of Just One Thing, amazing things happen.

That’s exactly what took place on Saturday. I got an inspiration for a project I’ve been working on, that feels like it’s gotten way too big. I figured out how I can “chunk it out” to be more useful — to myself and hopefully to others.

I found a bunch of research papers that intrigued me, and the more I looked, the more I found. So, now I’ve got a pretty sizable cache of papers that are just waiting for me to dig in.

And dig in, I shall. I started a new site a few months ago, called TBI Research Riffs, where I can discuss the brain injury and recovery research I’m coming across from the vantage point of someone who’s actually using it. Of course, being a multiple mild TBI survivor kind of disqualifies me in academic circles, thanks to the implication of brain damage and compromised thought process, but so what? It’s not hurting anyone that I’m playing with some of the ideas. I have no institution to answer to, I’m unaffiliated with any “camp” or governing body, and my words are my own.

Plus, I have a blog… and a Twitter account… and a bit of a following… so why not ask some pointed questions? The TBI research site has a horned bull as a logo for a reason 😉

Why not have some fun with it? I’ve been in and around the academic / scientific world all my life. My father was a college professor, my mother is an underachieving mathematical genius (think Good Will Hunting as a woman), my grandfather was a science professor and once served as the head of a statewide scientific academy, I have a cousin who’s a biochemist whose team just found a cure for a certain kind of cancer, my closest childhood friend and intellectual sparring partner is in the process of redefining an esoteric corner of philosophy, and I’ve got a handful of doctors in my family on the in-laws’ side. Being around them — both while growing up, and now — I’m continually struck by the political and logistical limitations that academia and funding put on them. It’s quite stifling, and it discourages them from really letting loose. And it’s a shame to see them so stymied by the requirements of their respective institutions.

That’s a shame. From what I’ve seen (and studied voraciously, back in the early 1980s), the real conceptual leaps are taken when you let your imagination run wild. But I don’t see much of that happening — at least, not in public.

In private, however… in the anonymous blogs, in the private journals, in the hidden workshops of independent and unaffiliated researchers, philosophers, and scientists… there’s a rich body of work emerging. And that’s pretty exciting to me. It seems to me that some of the most compelling science is happening on the margins. It almost has to — like Cavendish’es work — because the distractions and political exigencies of the institutionalized world are often antithetical to pure science.

So, I’m formally expanding my work in that area and getting better organized. I’m moving my research work off this blog and over to TBI Research Riffs. I’m going to keep this blog focused on my own personal experience, sticking with my day-to-day discoveries and developments from a personal point of view.

All my “sciencing” doesn’t really belong here. It needs its own space, where it can stay on topic. If anyone wants to read about me flailing around with great wailing and gnashing of teeth over logical inconsistencies in 20-year-old research papers, they can join me over there.

That will give me room to “play” in both domains, without blurring the lines with a bunch of pontificating and whatnot about esoteric or specialized topics that may not interest anyone other than me and the handful of people who dig into the research themselves.

Ultimately, of course there will be overlap. I’m a whole person, and each part of my life blends together and informs each other. Personal experience and scientific research are very much intertwined, as they should be. But this blog has always been about what it’s like to just live your life. So, I’m going to keep it that way.

And now, to start moving posts around.

Onward.

After TBI – How do you restore a Sense-Of-Self?

Photo credit: Myshelle Congeries
Photo credit: Myshelle Congeries

Five years ago, I started giving a lot of thought to what traumatic brain injury does to your Sense-Of-Self. Of all the things that brain injury does to a person, disrupting your sense of who you are and how you fit in the world is one of the most dramatic and disruptive pieces of the puzzle.

What’s more, it’s the most hidden one of all — obscured from those around you by “weird” changes in your personality experiences… and hidden from your own view, because it’s hard to tell what’s what, when your brain has been injured.

In fact, I believe that losing your sense-of-self is one of the most traumatic elements of traumatic brain injury. Yes, the injury was traumatic. But it’s the ensuing days and weeks and months and years that take the real toll for many. And if the disconnect is big enough between who you and everyone else understand yourself to be, and the person you appear to have become, it can wreak havoc — both internally and externally.

There’s a reason so many TBI survivors don’t have a lot of friends. Fatigue is one aspect. But also, our old social circle has a way of dissipating, when they realize you’re not the person they’re accustomed to.

It’s serious business. And it has profound impact. But other than a few folks, here and there, I haven’t actually found much writing about it — how to understand it, how to explain it, how to see it in the larger social context… or for that matter, constructive advice on how to actually do something about it.

Losing my sense-of-self was a massive “hit” to me and my well-being and quality of life. And it didn’t just happen once. It happened a number of times. Each time I got clunked on the head or slammed around in a car accident, I’d come back with a little more of myself missing. I couldn’t explain it to anyone — after all, I hadn’t even gotten knocked out. What was I complaining about? What was there to complain about?

It was terrible. And the worst was after my fall in 2004, when the injury was more severe and the change was more marked than it had ever been. It was sheer hell. And I had no idea who I was, anymore.

So, a couple of years ago, I decided to write an extended series on the subject. A book-length work, with chapters posted here, so people can read it.

And I was making good progress. I really felt like I was making strides, like I was getting myself back, and I was able to share what I’d learned with those who needed to know about my experience.

But then I hit a snag. All of a sudden, last summer, I stopped feeling like I knew who I was. I wanted to write about restoring my own Sense-Of-Self, but I just couldn’t. Because I really wasn’t sure, myself. There were still holes in my sense of who I was, still gaps left from an injury that was over 10 years old, but wouldn’t seem to f*cking heal. It felt all wrong, to be talking about getting my Sense-Of-Self back, when I didn’t feel like I’d done it.

Well, it’s been six months since I stopped moving forward, and in that time, I’ve settled down quite a bit. And while I do have my “off” days, I have to say, I actually feel like “myself”, most of the time. And I now actually feel as though I can speak to how a person can actually get back a sense of their Self.

There are bound to be those instances when I look around me and don’t feel like any of it is familiar… like I’ve been dropped off somewhere by folks who were giving me a ride, and decided they didn’t want me in the car anymore, when I feel asleep and started snoring too loudly. I think, because of my injuries, that may never go away 100%. But even so, I can honestly say that pretty much all the time, I actually feel like myself, again.

It’s an updated version of mySelf. But it has a whole lot in common with the earlier versions of me. And although it may feel foreign, at times, that foreignness actually feels like me. It’s not like I’ve been dropped into someone else’s body. It’s me, having the experience of not feeling like me — as me. If that makes any sense.

And in fact, the very experience of not feeling like myself, has become one of the identifying factors of my sense of who I am.

It’s familiar. It’s not always comfortable. But I have become certain that I mySelf can handle it just fine.

And I do. Because that’s who I now know myself to be.

Time to write another chapter.

You can read TBI S-O-S – Restoring a Sense-Of-Self After Traumatic Brain Injury here