After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.
Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that
Brain Injury Recovery is Possible.
I should know. I’m doing it.
and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.
Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.
Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.
Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.
We do know this from multiple studies:
Early intervention with the right information can help to reduce the impact of mild TBI / concussion.
It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.
And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.
Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.
In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).
So there it is — why I do this, and what my mission is.
I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.
But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.
So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!
Onward! … Together
I haven’t been doing nearly as much blogging, lately, as I used to.
Time was, I’d get up, do my exercise, eat my breakfast, and then spend 30 minutes or so blogging before I got my shower and went to work. I did this (almost) without fail, each and every day. And on weekends, when I had more time, I’d blog even more.
I researched. I wrote. I commented. I actively committed to sharing information about my life to everyone who might find it useful in their own recovery from traumatic brain injury, or in helping someone else who was recovering.
And it was good. It kept me going. It gave me a sense of purpose — a mission, if you will. This went on for a number of years. And yes, it was good.
Lately, I find myself wishing I were blogging, more than I really am. There are a lot of thoughts in my head, but it’s hard for me to sort them out, these days. I don’t think I’m declining cognitively… if anything, I think I’m doing much better than I have in a long, long time — maybe ever. The difference seems to be that I’m handling more on a daily basis. I have more challenges in my work life and home life. I have more responsibilities and more accountability. And that takes more energy from me, to handle everything well.
So, as I volunteer more, as I take on more responsibilities at work, as I gear up for my next career move, as I read more and am more active, I get tired more… so, I need to rest more. And I also have less opportunity for blogging.
And from where I’m sitting, that’s a good thing.
Here’s the thing though — in the midst of doing all that I’m doing, I really need to check in and show the rest of the world that recovery after mild TBI is possible. Recovery of a really high-quality life is possible after multiple concussions. And even when you sink as low as you think you can go, there’s still the chance (however remote) that you can get back.
I used to be pretty active on Twitter, but not so much, anymore. Frankly, it depresses me. It seems like all the concussion and TBI talk is around sports, especially pro football, hockey, Aussie football, etc. Despite the fact that countless non-athletic folks sustain mild TBIs from falls, assaults, and motor vehicle accidents, the talk is still focused on pro sports. Lawsuits. Who’s to blame for CTE in football players… and all that.
And it does the conversation a disservice. Because not only does it accentuate the dire nature of concussion — which just puts fear in the hearts of people everywhere (and possibly makes people less inclined to report or seek treatment) — but it also diverts the attention away from actual recovery.
How DO you recover from TBI? Even Mild TBI can do a number on you (as I found out, 11 years ago). So, how do you deal with it? Work with it? Overcome it? Everyone’s recovery is different, clearly, and what I’ve done may not work for everyone, but for heaven’s sake, certainly we can do better than we are now!
When I say “we”, I should really be saying “I”. Because I’ve been to the “valley of TBI despair” — not once, but a number of times. And I’ve wished I could simply die and disappear into the cold, dark earth. At different points, I’ve lost my ability to read, to write, to understand what people were saying to me, as well as how to regulate my moods and control my temper. I’ve had miserable, terrible headaches that wouldn’t go away 100% for years. I’ve had balance issues, sensory issues, work issues, relationship issues… directly related to and resulting from repeat blows to the head. So, yeah, I know what it’s like — at least in part.
All these things have resolved with me, for the most part… although I do have intermittent issues with them, now and then. And if I don’t talk about that, well, then it’s my bad.
It’s my bad, indeed.
I’m not one for sitting around feeling terrible about myself, though. I’m in a position to make a positive difference, so I will. It’s probably not going to be at the frequency and intensity that I’ve been working at for years, but it’ll be a heck of a lot more than I’ve done for the past couple of months. (Hmmmmm… I seem to remember vowing to do that, a little while ago, but nothing much has happened since then… but I can’t be too hard on myself – something is better than nothing.)
Let me close by saying this: My job situation, as tenuous as it is, is kicking me into gear to really re-examine my job choices. There are things I do really, really well, and there are things I struggle to do. I’ve been urged to master the things I struggle with, for my entire life. Now I’m at the point where I feel like I should put more emphasis on what I naturally do well, and not sink so much time and energy into mastering the stuff that I have trouble with. That’s not to say I don’t want to constantly improve, but I think there’s a missed opportunity to make the most of my innate talents and strongest interests… I just have to figure out what those are, after so many years of swimming against the stream of things I have trouble with.
I’m using this job uncertainty as an opportunity to get to know myself better — not only remembering what I’ve done well in the past, but what I’ve really enjoyed doing in the past (whether I did it well, or not). I have a deadline to update my job goals by next week, probably because of the impending merger, and also rumors that a lot of staff will get cut (mid-level management, I hear — although they always say that, and then it’s the little guys who get axed). I need to state clearly what I’m up to, what I plan to be up to, and why that matters to the company.
So, today (with no meetings — woo hoo!) I can spend some quality time really thinking about them, examining what I’ve done, thus far, and taking stock of what I’d like to continue to do. I can then transfer that into my resume and update it with what I want to do, not just what other people have told me I do well (but I don’t really like to do). Seriously, I am so hard-headed and tenacious and perseverative, when someone challenges me to do something — even if it’s not a good idea — I do it. I pull out all the stops, and I GO FOR IT. But what I’m going for, is sometimes someone else’s idea of a good thing. It’s not always mine.
For the past several jobs, I’ve stepped up challenges and roles that I’ve been asked to take on. Not because I wanted to, but because I was asked to. And I did a fabulous job — better than I thought, actually. That looks good on my resume, and it’s gratifying to realize I did great, but it’s not how I want to keep spending my life. God help me, no. I want to do things that appeal to ME, and that don’t exhaust me like the stuff that other people tell me to do.
That’s my goal. That’s my plan. Now, it’s time to go examine my life, see it for what it has been, what it is, and what I want it to be.
It’s time to dream a little — and put the pieces in place that will let me reach my dreams.
Several months after my TBI, when the shock of waking up after a month in a coma had started to dissolve into the realization that things were going to be really different, I began the slow task of sorting my life out.
There were so many issues; I was unable to process conversations quickly, I felt stiff and unemotional, and I was too accepting of the things happening around me. Others thought I was passive and disinterested, but it was simply my inability to respond that made me seem that way. I was having trouble making connections to people and things around me and, as happens to many of us survivors, felt extremely isolated.
Life seemed to be whizzing by and I couldn’t keep up.
Even with all this stuff going on, there was something positive lurking that I couldn’t see. Only later, when I looked back, could I understand what had been going on.
Read the rest of this excellent post at Finding Your Inner Strength after TBI – TBI Survivor
I just jump-started my TBI blogging again. Looking at my archives, I have only posted six times, so far this month. That’s quite a difference from my past. It’s been for good reasons. I’m getting a lot of things done that have languished for some time.
But I also have been depressed. I get really busy… I exercise regularly… I tick items off my checklists… then I get really tired and feel depressed. No joy left, by the end of the day. No enthusiasm on the weekends. Just slogging through my daily life, pin-balling between hyper-productivity and not wanting to have anything to do with anyone, not wanting to go anywhere or talk to anyone… just waiting for the day to be over.
It’s an odd combination. Because I’m pretty well scheduled, and I’ve got a lot of discipline and focus for the things I need to do. My upbringing stressed getting things done, no matter how you feel about it. Your state of mind was really beside the point. You just got on with life and did your part, even if you had no joy in it. Even if you didn’t care about it. Even if it had nothing to do with you.
If you were depressed, so what? You just got up and got on with your day, anyway. If you were in pain, so what? You just picked up where you could and did your part. Personal feelings and emotions had nothing to do with anything. Getting the work done and playing your role was the critical thing.
I think it went hand-in-hand with being in a rural area, raised by parents and grandparents who’d grown up on farms. When the cut hay has been lying in the field for two days and is dry, and rain is threatening for the late afternoon, you don’t get to lie in bed and say, “Oh, I don’t feel like baling today.” You get your ass up out of bed, and you go bale the hay. You work through any and all weather conditions. You do what is needed by the community, and you pull your weight, so that even if it does rain at 4:00, the hay is all baled and in the hay mow of the barn.
And I suspect that’s why depression and mental illness have become more prevalent in society. It’s not that there’s so much more of it, now. There’s just more recognition and acceptance of its very existence. I’m sure there have been many, many people over the eons who have been depressed or had some other mental illness. It was just never allowed to be seen. Or if it was so extreme that it couldn’t be eclipsed and covered up by strict roles and duties, you just got sent away.
Anyway, I haven’t felt much like interacting at all, this month. The shootings in Orlando really upset me. To me, it’s an assault on diversity and community. It’s an attack on human nature and our freedom to simply be who we are and gather with others like ourselves. It doesn’t matter to me if you’re gay or straight — everybody has something about them that is different, and we need to gather with like-minded people to remember who we are. It’s just that the people in Orlando who were killed and maimed aren’t in the mainstream, so many people don’t know how to talk about it or think about it, without looking for a way that “they brought it on themselves.”
I don’t see it as a religious or political thing. I see it as the product of our society that encourages people to take violent action against others, to relieve their own pain. And the politicizing of it by the very people who believe that same thing, really angers me.
And that’s all I’ll say about it. No more comments. There’s too much of that, already.
But back to my present. I really need to start blogging again. Regularly. It actually anchors me and helps me collect my thoughts. And I don’t need to get all rigid about the “right” and “wrong” ways to do it. I just need to do it.
Because the voices crying out that people with brain injuries are broken and can’t be repaired, are too strong.
Because all the fear about concussion often seems to completely overlook the chance of recovery. Concussion is turning into a sort of delayed-action death sentence, and I think that’s wrong. It’s a terrible message to send. But of course, that’s what gets the funding flowing.
Because despite having sustained 9+ concussions in my life, things are going really, really well for me, and I need to bear witness to that. To show that I’m good. That I’m recovering. That it’s not by accident, and it’s not a fluke.
Because, well, this is a huge part of my life. And in the midst of getting everything done, exercising, trying to get my sleeping schedule in order, and generally feeling down, it’s the one thing that can get me out of my head and lift my eyes above my current challenges to show me the precious long view.
I can’t make any guarantees, but I’ve just given myself some really good reasons to re-kick-start my TBI blogging.
So, I expect to see you soon.
Character is what you do, when no one is looking.
It’s why you do things, irrespective of reward.
I don’t want my life driven by asking “What will I get out of it?” but by answering “How will I contribute to others through this?”
Character is what gets you out of bed in the morning at a decent hour, so you get the exercise that you really don’t want to do, but must.
It’s what keeps you on schedule to you eat the breakfast and take the vitamins that your body needs to be healthy and productive throughout the day.
Character is what makes it possible for you to do all the things in the course of the day that need to be done, even though you don’t really want to do them
It’s what teaches you your place in the world, in society, in the grand scheme of things… and reminds you that your own personal comfort and convenience must
sometimes often take a back seat to the Greater Good.
Rewards are great. They’re the fodder of some great marketing campaigns, and they do motivate people.
But Character… now, that’s something that lasts, even when there are no obvious rewards in sight.
So, this new neuropsych is kind of a pain in my ass. And that’s fine. Because the last one could be a monumental pain in my ass, sometimes, and it did me a lot of good to meet with them regularly.
Why, pray tell, would that be so? you may ask?
Well, because dealing with people who are completely off-base is good for my reasoning faculties. And it also shows me how on-track I really am, when someone I’m talking with is clearly not recognizing what’s right in front of them.
This new neuropsych, as I’ve mentioned, is 30 years younger than my former neuropsych. They are 15 years younger than I. And it shows. One of the ways that they really show their age, is that they don’t stop to listen and really understand what’s going on with me, and they jump right into fixing things before they have a strong grasp on what the situation is.
For example, I’ve been talking about how I need some help getting to-do items off my list. I have a ton of things I’ve been wanting to get done, and many things that I intended to do in the first 5 years that I had my house. But less than 2 years in, I fell and got hurt, and I was “checked out” for some time after that. I’m just now — almost 12 years later — getting back to a level that’s near (in some ways) to where I was before. In other ways, I’m nowhere near, and I’m not sure I’ll ever be again. But the basic gist of it is that I need to gear up and take care of things that have been languishing and neglected, lo these many years.
And what does my neuropsych give me, but a sheet of paper where I should write down my goal, figure out my motivation, and then do a visualization about what the reward will be, if I get it done. And then write it down in my planner, and just do it… after doing a little visualization about how rewarding it will be to get it all done.
Oh. My. God.
Someone please help me.
I am so beyond that rudimentary approach, and I need something completely different. But when I tried to explain that to them, they just dismissed me — and insisted that visualizing rewards is a cornerstone of making progress.
Okay. So, that’s their opinion. That’s fine. There’s some truth to it. But I really need help just walking through my priorities and seeing where everything fits in my life. I don’t need motivational help. I need organizational help — and getting my head around the big picture of what I’m doing — and why.
It’s not just about getting things off my plate. That’s important, so I can free up my thinking to handle things that are bigger than a breadbox. But it’s also about prioritizing and getting my head around the complexities of my day-to-day.
Unfortunately, I don’t have a lot of confidence in them, with regards to that. I’m not sure I have a lot of confidence in anyone in the healthcare professions, right now. At least, not that I’ve encountered. I’m sure there are excellent doctors and providers out there, but the only one I found who could actually work with me effectively died last year. And even they didn’t exactly do a bang-up job of covering all my bases.
Ultimately — and this is the amazingly profound irony of it all — it’s the people who need help who are on the hook for making sure we get what we need. The very people who don’t have the comprehensive knowledge about all the physiology and possible conditions that might be at work… and who are having trouble thinking and functioning, to begin with… are the ones who have to manage our situations, be our own advocates, and so forth.
If nothing else, as frustrating as my situation is, it’s good practice for me. I’m not sure I’ve ever felt like people could really wrap their heads around my situation, anyway, so this is not new. I just had unrealistic expectations that I could pick up where I’d left off with my old neuropsych and start there with this new one.
Nothing of the kind. They’re even farther back than the last one, and I feel a bit like Kevin Costner’s character in Bull Durham where he has to train an up-and-coming athlete who has a better chance than he at going to “The Show”.
But I guess that’s how things go, as you get older. I’m just not used to interacting with people younger than myself – especially healthcare providers. But news flash – that’s going to continue to happen, so I might as well get used to it.
Okay – pause – let’s see how my memory for that starting image is doing:
Not too bad — I just forgot the hash marks on the left line, and the circles are a little far apart, with the lines longer and the circles smaller.
I’ll try again later.
Anyway, it all comes back to the idea that when it comes to our health and recovery, we are often on our own. It’s sad, but true. And some days, I feel as though I’d be better off just not even dealing with any trained professionals, because the benefit I get isn’t equal to what it costs me.
Sometimes, it is equal. But you know what? Those are the times when I pull out all the stops and put my focus into my own direction and my own program, just using the experts as a reference point.
I’ve got a few weeks before I see them again. And I’ve got plenty to keep me busy. I’ll figure something out, I guess.
This 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.
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.