MRI is done

Not me – but similar

Yesterday was a long friggin’ day. I had my MRI at 7:30 a.m., to get it out of the way. It was fine. It was in one of those mobile units, which I suppose are wonders of modern science, but was still basically an MRI lab in a truck. It was fine. Not exemplary, just fine. The technician doing the work was in a mood, and they were just cranking out patients at a brisk clip. They had a bit of a problem with getting the IV in me, which wasn’t my favorite thing. The other weird thing was, I couldn’t feel the saline they put in, or the contrast agent when it went in. The first time I had it done in 2009, I felt everything. But yesterday I couldn’t feel any of it, past the iv going in.

Odd.

Those kinds of things are exhausting for me, because I have to work really hard to keep still. I tend to twitch and tic involuntarily at times, so I have to really focus on keeping relaxed and still. By the end of the hour, I was beat, and I had some difficulty getting on my feet and walking away. It was a pretty involved brain MRI, and the equipment wasn’t exactly top-notch.

The good thing is, I got a copy of it all right afterwards. How cool is that?! It gives me a chance to study my brain before I go to the doctor. Of course, if I find anything amiss, it could throw me for a loop, but I’d rather be thrown for a loop in the comfort and privacy of my own home, than in a doctor’s office.

Anyway, the MRI hadn’t been read and annotated by someone who knows what they’re looking at, so I didn’t really have any points of comparison to go by.

I did pop the CD in my computer last night and take a look. I found one image that looked like I had a bunch of microbleeds going on. There were all these little clear dark spots speckled throughout my brain. I Googled them and found similar pictures of MRIs of people who had microbleeds. That concerned me a bit. But when I looked at the other images, there was no sign of those same dots, so I’m probably not reading it right.   Also, someone told me back in 2009 that those are actually blood vessels, which makes it good to see them.

It’s always nice to know you’re getting blood to your brain.

So, I have the disk, and I have my 2009 disk. I pulled them up side-by-side yesterday to compare how my brain looks. The problem is, different software is used to view the imagery from different years, so I don’t have a simple point of comparison. Also, the way the files are organized doesn’t make sense in the new one.

Although… I could try copying the files into BOTH software, and look at both years in the same program. I’m not sure that would work, because they appear to be different formats. But that could be confusion on my part.

I hope that works, because I really want to be able to see what’s what.

Just from an initial cursory look, it appears that

A) My pineal cyst looks bigger than last time. I’ll have to wait till the MRI gets read and annotated (and then I’ll request another copy with the radiologist’s notes in it).

B) My brain looks a little smaller than last time. There seems to be more space between my brain tissue and the inside of my skull, and my brain isn’t smushed up against my skull like in 2009. There’s more clearance, and there’s also more definition between the different folds (I think they’re called sulci). I don’t know what that means. I’ve seen pictures of people whose brains have shrunken — a lot — and it’s a little freaky.  On the other hand, if I’m losing certain white matter or grey matter, there may be a way to beef them back up. I know that regular meditation increases gray matter — it’s been documented. So, that’s fairly straightforward, I think. Also, certain types of things will actually shrink your brain — depression and stress, for instance.

Anyway, it’s impossible to say what the deal is with me. I’m not an MD or a radiologist, and who knows what the deal is.

The neuro is supposed to call me with the results, so we’ll see. I have no idea when that will be. I guess no news is good news.

In the meantime, I’ll get my systems together, I’ll spend some time this weekend looking at my MRIs, and I’ll see what I can find about fixing whatever I can.

Oh, as a side note, I am not all that impressed by the quality of the imaging taken in the back of the truck. Maybe it’s the type of MRI I got, but the images are not as clear, they don’t have the same level of detail as the 2009 ones, and some of them look “smudged”. It could be because I may have moved, but there is absolutely no smudging in the 2009 MRI, and I was in worse shape then, than I am now.

At least, I think I was…

Anyway, if I ever get that done again, I’m going to a proper hospital — preferably the one I went to before — to get this done. If I’m going to have heavy metals put into me intravenously, I’d better get some damned good imaging out of it in return.

More to come.

Onward.

Advertisements

How Can I Recognize a Possible Concussion?

One of the nice things about being a blogger is that I can add my information to the general wealth of data about subjects of interest to me – in this case, mild traumatic brain injury. This blog is about more than telling my side of the story — it’s about fleshing out info that other trusted sources provide, in ways that are personal and individual… and hopefully contributing to the general understanding about traumatic brain injury, and sports-related concussion in particular.

The CDC has a wealth of information on concussion in youth sports over at their Heads-Up site.

What’s missing is a bit of in-depth explanation about the different points they make.

Since this month is Brain Injury Awareness Month, I hope to contribute to the awareness piece with further info and examples from my own concussion experiences.

From the CDC site about recognizing concussions:

To help recognize a concussion, you should watch for the following two things among your athletes:

  • A forceful bump, blow, or jolt to the head or body that results in rapid movement of the head.

AND

  • Any change in the athlete’s behavior, thinking, or physical functioning.

Athletes who experience any of the signs and symptoms listed below after a bump, blow, or jolt to the head or body should be kept out of play the day of the injury and until a health care professional, experienced in evaluating for concussion, says they are symptom-free and it’s OK to return to play.

Signs Observed by Coaching Staff

  • Appears dazed or stunned
  • Is confused about assignment or position
  • Forgets an instruction
  • Is unsure of game, score, or opponent
  • Moves clumsily
  • Answers questions slowly
  • Loses consciousness (even briefly)
  • Shows mood, behavior, or personality changes
  • Can’t recall events prior to hit or fall
  • Can’t recall events after hit or fall

Symptoms Reported by Athlete

  • Headache or “pressure” in head
  • Nausea or vomiting
  • Balance problems or dizziness
  • Double or blurry vision
  • Sensitivity to light
  • Sensitivity to noise
  • Feeling sluggish, hazy, foggy, or groggy
  • Concentration or memory problems
  • Confusion
  • Does not “feel right” or is “feeling down”

Remember, you can’t see a concussion and some athletes may not experience and/or report symptoms until hours or days after the injury. Most people with a concussion will recover quickly and fully. But for some people, signs and symptoms of concussion can last for days, weeks, or longer.

Now, for some explanation to fill in the blanks…

To help recognize a concussion, you should watch for the following two things among your athletes:

  • A forceful bump, blow, or jolt to the head or body that results in rapid movement of the head.

The head, atop the neck, holds our precious brain — which has the consistency of pudding, and is surrounded by fluid which protects it from the bony inside of our skulls. Unfortunately, the bony insides of our skulls can have rough/sharp edges which can rake across the surface of the brain and cause damage that way, should the head/bodybe knocked so hard that the brain pushes past the protective fluid and scrapes against the inside of the skull.

You can see a video of different types of brain injury at YouTube. It’s very informative, and I recommend it.

When the body or head is hit hard enough, the brain can hit against the front inside part of the skull, be injured there — and then fly back against the rear of the skull (called coup-contracoup — which means head-back0fhead — injury), causing damage to the rear part of the brain as well. Under ideal conditions, the protective fluid provides an ample buffer to shelter the brain, and the inside of the skull is not really sharp and uneven. Unfortunately, there are no guarantees that that’s the case.

Forceful bumps or blows or jolts to the head can be things like:

  • being hit on the head by a ball, such as in soccer or baseball
  • colliding with another player and bumping heads
  • being elbowed or kicked in the head
  • colliding with the catcher and slamming your head against his/hers when you’re trying to steal homebase
  • falling and hitting your head on the basketball court floor

Another way the brain can be injured by a hard hit to the body, is a whiplash effect — where the connections that are located at the base of the skull and neck are twisted and torn by the head snapping forward and backwards really hard. You don’t need to be knocked out, and you don’t even need to have your head hit, to sustain a concussion in sports.

Forceful bumps or blows or jolts to the body can be things like:

  • being tackled hard in football
  • being fouled hard and knocked to the floor in basketball
  • falling during a soccer game
  • colliding with another player when going after the same ball
  • landing hard after any kind of fall, even if your head doesn’t hit the ground
  • running into the wall when you’re eplaying squash/raquetball

It’s important to remember that these very common collision/impact occurrences (which are part and parcel of just about any sport) will NOT necessarily lead to concussion. If everyone who was tackled hard, or fell, or was fouled hard and ended up on the floor/ground sustained a concussion, there would be a whole lot of impaired people walking around.

Being hit or tackled or falling during a game or practice is NOT a guarantee of a concussion. This is where the next criteria comes in… the “and” part.

AND

This AND is important. The first set of criteria — the bump, blow, or jolt to the head or body are no guarantee that a brain injury has occurred, but they can serve as a trigger to watch out for the following. The next point is what acts as an alert that a concussive event has occurred.

  • Any change in the athlete’s behavior, thinking, or physical functioning.

Signs Observed by Coaching Staff

  • Appears dazed or stunned
  • Is confused about assignment or position
  • Forgets an instruction
  • Is unsure of game, score, or opponent
  • Moves clumsily
  • Answers questions slowly
  • Loses consciousness (even briefly)
  • Shows mood, behavior, or personality changes
  • Can’t recall events prior to hit or fall
  • Can’t recall events after hit or fall

Symptoms Reported by Athlete

  • Headache or “pressure” in head
  • Nausea or vomiting
  • Balance problems or dizziness
  • Double or blurry vision
  • Sensitivity to light
  • Sensitivity to noise
  • Feeling sluggish, hazy, foggy, or groggy
  • Concentration or memory problems
  • Confusion
  • Does not “feel right” or is “feeling down”

Here are some examples from my own experience:

When I sustained a concussion from a hard tackle during a football game in high school, there was an immediate change in my thinking and physical functioning.

  • First of all, I was not thinking as quickly as I was before the hit. Even I could tell I was slower — I wasn’t following the calls by the quarterback very well, and I was clearly a little dimmer than I had been before the hit. I had trouble understanding what was said in the huddles before the following plays, and I had trouble following the instructions I was given. For example (I can’t remember the exact details, but this is how it was), when I was told to go long and then cut left at a certain point, I went long, but I didn’t cut left.
  • Secondly, I was not as coordinated as I had been before the hit. I ran clumsily — like I was drunk — and I couldn’t catch the ball when it was thrown right to me. I also stumbled a lot, and I fell a few more times. For all I know, I did more damage to myself, but I was so totally focused on continuing the game and not letting my teammates down, I refused to take myself out of the game. They had to stop the whole game, completely, to get me to quit playing. I was that stubborn.

When I sustained another concussion from a fall during a soccer game a year or two later  in high school, there was yet another immediate change in my physical functioning and behavior.

  • First of all, I was a lot less coordinated than I had been before I fell. I couldn’t control the ball as well as I had before, and it felt like I was moving in slow motion. I stumbled and fumbled, and there was obviously something different about how I was playing.
  • Second, I was not the same player I’d been before my fall. Before, I had been aggressive and confident on the field. Afterwards, I was hesitant, confused, and I hesitated before shooting on the goal (or just plain failed to shoot). I had a number of opportunities to score, but I didn’t, because I was uncertain and confused. I was also less able to be a team player. I didn’t pass the ball to my open teammates as frequently as I should have. I also became more withdrawn and was not communicating with the coaching staff on the sidelines. It was like I was in my own little concussed world, suspended in a foggy soup that slowed down all the input and output.

Athletes who experience any of the signs and symptoms listed below after a bump, blow, or jolt to the head or body should be kept out of play the day of the injury and until a health care professional, experienced in evaluating for concussion, says they are symptom-free and it’s OK to return to play.

Absolutely, positively. This must be done. Unfortunately, I myself never received any medical evaluation or treatment for my injuries. But on the bright side, I was removed from play in both instances. Nobody watched me afterwards to make sure I was symptom-free and it was OK for me to return to play. Then again, by the time I got to those games, I’d had a number of TBIs already, so I already showed symptoms of impairment. Still, the changes I did experience, on those two separate instances, were clear indicators that I’d undergone a concussive event. I only wish someone had known what to look for, and helped me out.

Another important piece of the CDC info is:

Remember, you can’t see a concussion and some athletes may not experience and/or report symptoms until hours or days after the injury. Most people with a concussion will recover quickly and fully. But for some people, signs and symptoms of concussion can last for days, weeks, or longer.

This cannot be overstated. Concussion, hidden as it is inside the skull, can also be hidden by time. It can take hours or days for symptoms to show up, which is why it is so important that not only coaches, but also teachers and parents and teammates are all familiar with the danger signs and informed about how to respond appropriately.

One of the things that can show up later, are behavioral issues. Indeed, behavioral issues are the bugaboo of mild traumatic brain injury, because on the surface everything looks fine, and the brain may have recovered from its initial trauma, but there are microscopic changes under the surface that can have long-lasting effects. If you know someone who plays sports, whose behavior has suddenly started to change for the worst – suddenly they have a lot of anger, rage, irritability, distractability, sensory issues, fatigue, insomnia —  it could be they had a concussion during a game or some other event — and nobody realized it, including them.

Concussion doesn’t just affect the student athletes — it affects everyone who interacts with them, everyone who loves and cares about them. It’s in all our best interests to learn about it, learn what to watch for. And to report it to someone who can help.

As the CDC says, most people recover quickly and fully, and it doesn’t need to wreck their lives. But if you don’t pay attention to the first warning signs, it is all too easy to re-injure yourself (having a concussion increases your chances of experiencing another one from 2-6 times). So, paying attention, right from the get-go can help prevent other problems from happening.

In retrospect, I wonder what might have happened, if I’d stuck with track and field and cross country exclusively, and not played any team sports that involved tackling or the danger of falling/collisions. I wonder if I would have been so susceptible to drugs and alcohol, if my behavior would have been so problematic. Thinking back, I had a ton of problems when I was a kid that actually resolved as a result of organized sports. Unfortunately, the thing that helped me most, also introduced more problems to my mix.

Well, I can’t worry about it. What’s done is done, in my case. I’m just happy I’m as functional and well-off as I am, today.

I also hope that coaches and trainers and teachers and teammates are learning enough, today, to help avoid the kinds of situations I got myself into… and help address the after-effects of the kinds of injuries that I — and hundreds of thousands of others young athletes — experienced. The CDC material is really helpful, and they have lots of free information and additional materials available.

Check ’em out. It’s worth the trip.

A reply to a comment that took on a life of its own

I had started to respond to NEDream’s comment and the reply really took off… I’m incredibly tired, these days, but I did want to post this…

NEDream, I hear you… There is a lot I would love to be able to do, but given that I’m coming from a place that’s impaired — and often in ways I don’t even realize — it’s hard to know just what to do. I’d love to be able to go on lecture tours, meet with professional caregivers who know far too little about tbi, consult with best-practices people, and generally contribute to the widening knowledgebase for professionals — the front-line care providers and experts in these extreme health matters. But I tend to run out of steam (my high energy notwithstanding). Plus, I’m dealing with additional health issues that had escaped me as being real problems, also I think in part due to my cognitive issues.

How ironic, after all these years of being beaten up by others for being “less capable” because of injuries and deficits I myself could not detect, now I’m able to detect my deficits and identify my injuries, but the people who would/could help me are totally thrown off by my ability to deal… Catch 22, if ever I heard one. And it makes me absolutely NUTS to think of how much good I (and others) might be able to do others like us — I know I would have benefitted greatly from someone like me crossing my path about 10 years ago!!! — yet the experts and people who are guarding the castle of acute health care are barring us from crossing the threshold because, ironically, we’ve been injured. That’s what it feels like, anyway. I might be totally off-base about this, but whenever I talk to a professional psychologist or neurologist or neuropsychologist, I get the sense that they are looking down their nose at me… even though I hold in my possession a vast amount of experience and knowledge that could probably help them become better practitioners… if only they’d let me help them. I do want to help. But I get the impression, I’m not “allowed”. After all, I am brain-injured 😉

I too am really torn about what to do to help. I think that people like you and I are extremely well-placed for this time in history. Not only do we have access to technologies that put our words in front of total strangers and people who may be looking for information we have, but we also have the kinds of experiences that people used to NEVER (and I mean NEVER) talk about. I should know — I came from that world. And I’ve been dealing with this –crap– complicated situation for most of my 43 years. My family was so ashamed of me, they didn’t understand why I did the things I did, why I couldn’t figure stuff out as quickly as others, why I would say one thing and act like I was totally right, when I was totally wrong… why I couldn’t finish any chores they had me do, and I would always miss some detail — like a corner of the hedge I forgot to trim or a portion of the yard I forgot to mow or the leaves I raked into a pile, but couldn’t manage to haul away to the compost heap. They just didn’t understand, they thought — I guess — that it was God’s will that I suffer like that, and I was just their cross to bear. They were grateful to have other children who didn’t have all the issues I did, but I was always there to remind them that something was amiss… even if they didn’t understand what that something was, or why it was.

Now people are talking about this… and I think that as people look back, they will see that head trauma is much more a part of human experience, than we thought, before. My father-in-law was in WWII (he passed away over 10 years ago), and from the stories I heard about how he was when my spouse was growing up, it sounds like he totally had a TBI — if not several — when he was at war, if not earlier in life. He was always a real fighter — always getting in brawls, beating on other guys and getting beaten on — and the stories I heard about his temper, his violent outbursts, his need for silence at the end of a long day, his sensitivities, his quietness that would suddenly explode, his troubles with drugs and alcohol, and his constant remorse over what he’d done wrong in life… well, it sounds pretty familiar to me, and I suspect that he had sustained TBI’s throughout his life that colored his experience. But back then, when he was active as an adult, men were supposed to be the strong, silent types, not show any emotion, not betray anything about what was going on inside him. I think back now, and I can totally see how he just suffered and suffered and suffered in silence, because he — and everyone else — didn’t understand the nature of his injuries.

But as I was saying — and I’ll finish this thought sooner or later 😉 — now people are talking about TBI and they’re starting to lobby for assistance. They’re starting to raise awareness. They’re advocating and agitating, especially on the internet. Now that we have the web at our disposal, we can get the word out there about our experiences. And even though we may be “pedestrians” and “lay” people, we are still experts in our own experience, and we can share with others what it’s like to live — and live well — with (and in spite of, or even bacause of) our injuries. There’s that whole “wounded healer” paradigm that some therapist friends of mine love to talk about. And when it comes to giving people hope, there’s nothing like hearing from others that they’re in the same boat as you, more or less.

One of the things I really disagree with, in regard to current thinking about TBIs is the concept that “every TBI is different”. That may be true, but I think that some health care providers use it as an excuse to not fully engage with TBI survivors and not explore all the options. I think they also say that to cover their asses, so we don’t get our hopes up and have “unrealistic” expectations of them. I totally agree with the author of “Brain Heal Thyself” (I think that’s they title) who really takes issue with that “ever brain injury is different” attitude. Yes, we are all different. Yes, we all have different injuries. Yes, our brains are all different. But we share common traits with one another — in particular, the part of ourselves that’s been hurt — that can unite us and give us a sense of belonging and community. To impose a sense of isolation and alienation on someone whose most prized physical resource has been damaged, is not only unfair, it also strikes me as being a little cruel. All because doctors don’t want to admit that they don’t have all the answers, and they might actually learn something from us… I know I’m over-simplifying and I’m venting. I’m tired, after a long day of being tired… But I think my complaint has merit.

And I’ve got lots of complaints. (I do vote, after all 😉 ) I’m one of those people who cannot help but think critically… not because I hate everyone and everything (though I have my moments), but because I feel that criticism is one of the highest forms of flattery — if I didn’t care, I wouldn’t bother to criticize. I’d just let people wallow and rot. But I do care. I want to help shed light and explore things that people cannot see or have overlooked. Unfortunately, my combination of injuries and personality conspire to make me look different than how I feel, and I often don’t realize that I’m coming across as rough as I am. That’s why I prefer to write — it gives me a chance to edit before I post what I say. Sometimes I speak/write too quickly and I get in hot water, but that’s just par for the course.

I’ve been writing a lot lately, because I’ve been pretty freaked out by some health stuff that’s come up, and I’m worried. No, I think terrified is a better word for it. I’m sure it will all work out, but given my pathetically limited ability to communicate verbally with doctors, I’m really concerned that I won’t be able to communicate with them, and I won’t get the proper care. It’s not a small thing I’m dealing with — and I need to deal with it — but I’m just not sure how I will be able to do it.

I’ll post more about that later, but right now I need to stay on topic and move this along. A lot of things are coming up with me, so it’s not difficult to move *something*. Ironically, the more fatigued and uptight I am, the more I’m driven to write and create and comment on any- and everything that crosses my path. That, and with Veteran’s Day and thinking about how shafted so many of our brain-injured wounded warriors are being… how alone they can be… how lost and alone they are, without sometimes even knowing WHY… it nudged me into action. For my father-in-law, who was wounded multiple times in Europe, and got sent back, time and time again, to be shot up and patched up and sent back in… For the fallen who gave their lives… For the walking wounded who fall through the cracks… for all of us who have been knocked around in this rough-and-tumble world, and may not always have a fighting chance to recover…

I can’t believe that story about your mom’s friend’s husband’s son… I would like to be all cynical and jaded and not be affected, but I literally cannot believe that this actually happened. Pardon my French, but… Oh, for Chrissakes! Holy f*ing sh*t — WTF!?!?!?!? That just totally freaks me out. A neurologist suggested that the guy remove a *vertebra* to deal with the pain?!?!?! WTF?!?!? I mean, is this what they teach people in med school? I have a relative who’s a freshly minted doctor, and they have very little positive to say about neurologists. They just don’t trust them. And after the stuff I’ve been through with some supposedly very good ones, I have to say I’m starting to agree. Of course, there’s also something to be said for second opinions, and personally, even if I was in horrific pain, I’m not sure I’d have the balls to have one of my vertabrae removed(!). That just sounds so extreme. I guess I’m just a wuss, but, man, oh, man — that’s just HORRIBLE.

Okay, I’ll calm down, now, but I get SO upset when I hear about people’s lives being ruined even more than they already are, because some doctor — who is in a position of trust — gives them BAD information, for whatever reason. It’s all the more upsetting, because I really believe it’s avoidable. There are so many of us walking around with this vast amount of life experience, who could open some eyes — if people (including doctors) would only listen. And the experience we carry around with us can apply on both sides of our issues — both towards informing caregivers and experts about what the deal with us REALLY is… and towards informing the walking wounded that their doctor is NOT God, and they can be wrong about so many things.

I think the medical establishment, as it now stands, needs a good deal of work, not least of which is a good dose of humility and the recognition that something is systemically wrong with the AMA and how it trains its doctors. If there were something I would change, right off the bat, it would be the practice of teaching doctors about the human body by using cadavers. I think the practice of studying a dead corpse to learn about the living body is a BAD IDEA, and it starts you off on the wrong foot. Of course, I’m not a doctor, so who is going to listen to me? I’m an engineer and I make my living from creating solutions based on logic, not mystique and precedence-based assumption and a sleep-deprived sense of entitlement, so I’m probably not the sort of person a medical person will listen to. But it seems to me, if you’re going to treat living people, you need to learn how living beings survive and thrive. Call me crazy…

I know I’m just venting, here, and I’m not being supportive and productive and making a positive contribution, but I just don’t understand this whole dynamic with doctors. I don’t understand why they think they’re all that… why they think they can tell people to remove a vertebra… why they think they can toss around diagnoses (correct or not) and pretend that they are God. I just don’t get it. It seems really dangerous to me. Really dangerous and not very bright. I suspect all that sleep deprivation during their training does something to their thought processes, and the fact that so many of them deal with crises so much… and their limbic systems get whacked… amygdala alerts 24-7 can’t be good for the human system. So I think they may end up getting turned into medical machines of sorts. I’m just thinking out loud, here. I do have tremendous compassion for the folks we turn to for our life-and-death decision-making. And I would never have the nerve to step into that role. It must take a very special kind of person to do it properly. Problem is, I’ve met precious few doctors who I’d trust with my life — I do know a few, and I literally would trust them with my life. But the majority… I just don’t know how our society has gotten to a point where we value human life so little, that we turn our fate over to people whose egos are clearly driving their decision-making, no matter what anyone else has to say about it. “They’re the doctor…” And that’s supposed to be enough?

What can we do about this… indeed? The more I think about it, the more impotent and ineffectual I feel. There are SO MANY PEOPLE SUFFERING, because they cannot get the right information, and when they do get information, they cannot decipher it, and they’re left to their own limited devices… just when they need more help than ever. I fell so deeply for the suffering folks — tbi survivors and family/friends alike — who are struggling with this seemingly insurmountable obstacle, given no hope, told that they have lost just about everything, and whatever is left, they’re going to lose, too. I almost can’t bear the thought of all that suffering — especially in the lives of our returning veterans… and their families, too.

It’s just so hard. And I speak from many years of experience. IT IS HARD!!! It is harder than anyone with a fully functioning brain can imagine. It is harder than anyone who has not been through it can possibly comprehend. TBI — by its very definition — defies comprehension. And it leaves us to fend for ourselves, come what may. Some days, I can’t believe I’m still here. All the bad decisions, the run-ins with cops, the accidents, the screw-ups, the near-misses, the close calls… And all the people I’ve totally pissed off and alienated, who had once been valued allies and friends… Man oh man, am I blessed to still be here and be able to write this! I am so deeply grateful to whatever higher power out there thinks my life is worth saving. I am so profoundly grateful to all the strangers who helped me (or who just resisted the urge to take advantage of me)… the friends who bore with me… the (few) family members managed to love and accept me… the partners who — for however long — put up with me. And the person who has managed to hang in there with me for the past 18 years. I am indeed blessed. And I can’t account for it at all. I mean, when I’m in a bad way, I’m REALLY in a bad way… just impossible to live with… How I still have what I have, is nothing short of a miracle.

Now, I can’t speak for anyone else, but I feel utterly compelled to help. To do something. And my “thing” is writing — detailing my life experience in as much depth and breadth as I can. I don’t care much for fame and fortune — well, fortune would be nice, and I won’t turn away financial contributions to help me dedicate my life to educating people about how to live well in spite of TBI — I just want things to change. I want people to hear about someone who has sustained multiple TBI’s throughout their life and has managed to put together a really, really “normal” sort of existence that nobody — especially not my parents — ever thought I would have. I want people to know that they don’t HAVE to lose it all, just because they have a brain injury, and in some ways, they may even find themselves able to do different things better than ever. It takes a long while for a lot of us. It took a long while for me, to sort through everything. But it can be done. TBI doesn’t have to be a death sentence. And it doesn’t need to mean the end of everything you care about and love to do. Yes, you may need to part with some things that used to mean a lot to you. I lost a bunch of stuff, after my last injury, including my ability to spend time in open spaces, be comfortable around strangers, my love of reading fiction, and a really, really good job. My injury cost me hundreds of thousands of dollars in personal net worth. And I lost a lot of friends along the way. But you know what? I’m still here!!! And I’m still loving my life! I’ve let that old shit go, about how I was so wronged and life is so unfair. Of course I was! Of course it is! No kidding. But I’ll be damned, if I’m going to let that stop  me from living my life.

Seriously, money can be replaced. And every day, I’m finding ways of regaining/restoring the things that mean most to me. I don’t WANT to dread reading stories, anymore, so I’m practicing reading story-driven books, like autobiographies and personal memoirs of people who have overcome things like me. I’m also starting to read fiction online, which I can take in shorter bits and pieces, while I’m at work. I’m coming to terms with the anxiety and fear that’s been driving me all my life, learning new techniques for how to deal with it all — the first part being, just realizing how driven I am by anxiety and fear… I never realized it till this past year, when I really started coming to terms with my TBI’s. And now that I’m aware of it, I can actually do something about it!

I’ve also got new friends who love and accept me for the odd and sometimes bizarre creature I am. Jobs come, jobs go. I’m still breathing, I’m still able to put one foot in front of the other. And as long as I don’t hold myself to unrealistic expectations, including the expectations of others who have some pretty superficial values, and I give myself a break and remember I STILL MATTER AS A HUMAN BEING!!! well… I’m fine.

What we can do to help — and yes, now I’ll finish the thought 😉 — is write all this stuff down. Everything. As much as we can record. Put it out there. Spread the word. Make it possible for people to do the social networking thing with our blogs and do social bookmarking and all that. Do podcasts. Do teleseminars. Do webinars. I, myself, have to really watch my energy, and I have such a hard time dealing with people in person, that I’m pretty much excluded from the public speaker circuit. And I get so turned around when I’m actually talking to another person, at times, that I can’t get my words out, and I sound like a real space-cadet. That’s not who I am, but that’s how I present, a lot of times. So, I recognize my limits, realize what I cannot and should not do… and I do something else. Like blog. The things that I cannot do, I really should not do. But the things that I can do, I can do really, really well. So, I figure out what works, and I just stick with that. I let the other people out there do the things I cannot — like public appearances and YouTube videos and podcasts and whatnot. We all have something to offer, no matter how severe our array of deficits. The trick is finding out what works for you, and doing that as well as you can (without completely exhausting yourself, which I am prone to do).

Very, very cool. Wow — something that actually works. Imagine that… I hope it continues to work for you. By all means, do post info about this here, if you get a chance.