Who am I today?

Summary / Bottom Line

I don’t feel like myself, these days. I haven’t felt “like myself” in a long time. And all the hopes and dreams I once had as a kid, seem so far from me. But maybe, just maybe, I am truly living my hopes and dreams… I just don’t feel like I am. And that changed sense of myself is keeping me from realizing how much my life really does resemble my onetime hopes and dreams. Restoring a sense of self can be a huge challenge with traumatic brain injury, and adjusting to how things truly are, versus how they appear to be, or feel, is one of my biggest challenges.

I’ve been thinking a lot, lately, about my identity… who I was when I was a kid, who I am now, and who I’ve been along the way. I recently had a birthday, and while I don’t feel like I’m having a mid-life crisis, I still have been thinking a whole lot about whether I am where I expected / hoped / planned to be, when I was younger.

I know that “life happens” and we can end up very far from where we wanted to be when we were younger. And to be honest, I’m not even sure if I had specific plans about the trajectory of my life, when I was younger.

I do know that what I wanted more than anything, was to become a scientific researcher. I wanted to go to school to get a bunch of degrees, and then focus on research. I’m not sure what kind of researcher I wanted to become — I just wanted to study, collect information, synthesize it, and publish it.

I also wanted to be a writer. Maybe more than being a researcher. Being a writer is what I always wanted to BE. Research is what I wanted to DO. In a way, being a writer is like being a researcher – it’s not the same type of science, but there’s a sort of science to it — observing, drawing conclusions, testing your hypotheses, etc.

Over the course of my life… well, life happened. I got hurt. A bunch of times. I fell and hit my head a bunch of times. I got in car accidents a bunch of times. I was attacked. I did stupid things. And I got hurt. I also had a lot of chronic pain that knocked me out of the running when I was in my early 20s. And I got in trouble with the law and some rough characters, and I had to go on the lam when I was in my late teens, which limited my future prospects.

Now, looking back, I see how so-so-so many opportunities have been out of reach for me, because of everything that happened back then. I have done my best to patch things up over the course of my life, and relatively speaking, I’ve done extremely well for myself.

But am I really where I want to be today?

I’m not sure. This life I’m leading doesn’t look and feel like I hoped it would. It feels strange and foreign to me. Hell, I feel strange and foreign to me. I feel like a stranger to myself, half the time. I don’t have that feeling of being “comfortable in my skin” that people talk about.

Now, I used to have that feeling. I used to have a clear sense of who I was and what I stood for. And I didn’t let anyone hold me back. Even when I was getting in trouble with the law and then went underground, living overseas till things quieted down here, I had a clear sense of who I was, and what I stood for. I had to change my life for a while, and I couldn’t do a lot of the things I had once enjoyed doing — like going anywhere I wanted, whenever I wanted. But it didn’t feel like I’d lost a part of myself. I’d screwed up for sure, but I was determined to fix things.

When I was in all that crippling pain, 25 years ago, I had to let go of a lot of activities that had once meant a lot to me. I had to stop exercising and spending time outside in the sun. The diagnosis that the doctors came up with was probably wrong (I never had tests that confirmed or denied it 100% — they didn’t have good tests, back then). But I had to take steps in any case. As it turned out, the things that I was told not to do — exercise a lot, move a lot, test myself physically — were exactly the kinds of things that I needed to do to alleviate my pain. Movement and staying active was NOT going to hurt me. Being sedentary was.

In those years when I was dealing with the pain, I lost of lot of things that meant a lot to me. I couldn’t eat and drink the same things anymore, and I couldn’t do the things I wanted to do. But I didn’t have a sense of having lost myself. I was still who I was, and I was clear about that.

Now things feel so strange and foreign to me. It’s hard for me to describe. Even though I know I’m doing better, and I have numbers and feedback from friends and family that indicate I’m improving, I still don’t feel like myself. It’s hard to describe — just that someone else seems to have taken up residence in my life.

I know my personality has changed a good deal, since my fall in 2004. And it kind of freaks me out, because that wasn’t the first mild TBI I’d ever had. I’ve had a bunch — probably about 9. I’ve been assaulted once, had at least 4-5 falls, got hurt a couple of times playing soccer, got majorly dinged while playing football, I’ve had a couple of car accidents, and so forth. But not until I fell in 2004, did it totally screw up my life.

Not until the past years, have I felt like a stranger to myself.

It’s kind of getting me down, too. At least, it has been. I try not to think about it, but it’s still always there… Who am I today? What am I going to do today that doesn’t seem “like me”? What am I going to feel and think and say and do that doesn’t seem consistent with the person I know myself to be?

That feeling of observing yourself going through life… it’s weird. Disorienting. I resolve over and over again, to hang in there and just keep plugging, until I see some glimmer of who I am. And sometimes it works. I’ve been feeling more like “myself” lately, which is nice. But at the same time, I don’t quite trust it. Like in Flowers For Algernon, when the main character stops taking the medicine that made him think and act like a normal person… and he drifts back into his old state. Whenever things are going well for me, I feel like I’m looking over my shoulder for signs that I’m slipping back into not recognizing myself.

I would like to stop this. It’s not fun, and it’s not productive. It serves no one, and being on high alert over it just kills my quality of life.

So, over the weekend, when I had time to think about it, I realized that maybe it would be better if I just acclimated to this feeling and let it be. It could be that I actually am getting back to my old self — I just don’t have the sense that I am. It could be that I’m even better than my old self. There’s a good chance of that, because my old self was majorly concussed and had all sorts of issues that I didn’t even realize. It could be that I’m in better shape than ever before… but I don’t have the sense of it being so, and therefore I don’t trust it.

I don’t feel like I’m myself, most of the time. Maybe all of the time. But maybe I actually am. Maybe the missing piece is NOT my personality and my identity, but the sense of my personality and identity. Just because the sense of being who I am isn’t there, doesn’t mean I can’t BE there myself.

Rather than getting all caught up in recreating that sense of myself, maybe I need to just get on with living, regardless of the sense of myself. Maybe I just need to trust it… not place such high demands on what qualifies me as me, or not-me.

And maybe — just maybe — the life I have now is exactly what I was hoping /expecting / planning / dreaming I’d have, back when I was a kid. Looking around at my study and thinking about how I live my life, I realize that I am doing exactly what I always wanted to do, when I was younger — reading and researching and writing and publishing. I write and publish this blog. I read and research TBI-related materials (especially concussion and mild TBI) and I spend a lot of time thinking about them.

I also read and research other subjects and write about them, though I haven’t published much of that … yet. I am getting to a place where I soon will, and then I will have that to my credit, as well. This is all done independently, according to my own standards. I’m not doing it professionally, but I have managed to help some people, here and there along the way. That much is clear from the comments on my blog.

So, even though it may feel like I’m one person, the objective facts reveal something quite different. And for me, it seems the challenge is to not let feelings of weirdness and alienation and failure stop me from just getting on with my life.

At some point, I just need to trust. I’m working on it.


Guest Post: Why I Hate The Invisible!

Speed can do some serious damage – and so can attitudes

Another great post from our friend Ken Collins

37 years ago today, I was recovering at my parent’s home in Oakridge, Oregon after I ran head first into the side of a parked car while riding Pat Moore’s snowmobile by Summit Lake, Oregon, at 4 a.m., on December 31, 1976. My friends who were there saved my life and said I was going full speed when I hit the car and was catapulted from the snowmobile to the side of Bob Brewers Ford Pinto.

On impact, I broke my left jaw below my chin and rammed my right jawbone through my ear canal, separated my skull completely (cap fracture), shattered most of my teeth and fractured a rib. In the hospital the doctors couldn’t set my jaw for two days because of brain swelling.

My hospital records show that I was in a Posey Jacket and wrist restraints all the time I was in the hospital. One day when I was in the bathroom I yanked out my catheter and a few days later were sent home with my parents because I started to get loose (3 times in 6 days). On my last day in the hospital I was found urinating in a planter in the hallway.

For my own safety and the liability of the hospital, I was sent home with my family who were told if they couldn’t handle me then put me in a nursing home. Luckily my family spared me the fate that awaits many young people who sustain these types of injuries: long term confinement to the nursing home, long term rehabilitation facility or state institution – unless they have good insurance, but when that runs out and they become “poor”, many will be forced to have the government pick up the tab. This starts by applying for Social Security Income (SSI).

After people go on SSI, they will become eligible for Medicaid, which will pay for long-term care in a nursing home or institution, if Medicaid home and community-based services aren’t available to them in their state. These services are critical if the person with a disability wants to go back home and try to get on with their lives.

This new life also comes with having to survive on $498.00 a month Social Security benefits to pay for shelter, food, utilities and whatever else they can afford. When they are lucky enough to have a long work history they will go on Social Security Disability Income and make more, maybe $600 to $900 a month. What kind of life can you afford on this income?

Oregon was one of the first states in the U.S. to develop Medicaid home and community-based services. This was all after my injury, and if home and community-based services would have been available, I might not have had to steal food and do other things that would have put me in jail or prison if I’d been caught. It’s humiliating to have to steal food to survive.

Humiliation is invisible: that’s why I hate the invisible!

Every night when I would go to bed and close my eyes and try to sleep I would see –
pictures of people, images and objects floating by as I lay there with my eyes closed. They were like negatives of pictures just floating by. Faces of people looking at me, pictures of people setting or pictures of several people setting or standing, all kinds of scenes and images floating by as I tried to sleep. When I would finally get to sleep I wouldn’t dream. In the morning when I awoke it was like I didn’t sleep at all.

These pictures floated by for about five years, and it took another five years before when I closed my eyes – the face of the man with a beard and long hair looking at me on the other side of my eyelids went away.

Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end.

Before my accident I was a professional baseball player and everyone’s friend. After my injury, when I would see the same people in the community – they would go the other way.
The struggle and turmoil caused by brain injury is invisible: that’s why I hate the invisible!

It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like – now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.

It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do that day. Now, at night when I sleep I can dream again. It took me 25 years before this was possible.

To look at me now, 33 years later, you would never guess that I have had such a difficult time. I have faced many of society’s barriers, most of these attitudinal. Attitudes are invisible and are fueled by ignorance and fear to create invisible lines of prejudice and discrimination. Attitudes are invisible and breakdown trust, hope and our own well-being.

Attitudes divide us, separate us and control us: that’s why I hate the invisible!

Handicapped gets its origins from an old European phrase, “cap in hand” when people with disabilities had to beg to survive. Why is it that people with disabilities are forced into begging the Congress and Senate every year not to cut Medicaid, food stamps and other programs they depend on to survive? Politicians say they care and are full of promises to help. What they say and what they do are two different things: that’s why I hate the invisible!

Invalid and invalid are spelled the same, but have different meanings. These words perpetuate the stigmas and stereotypes people with disabilities must wear.

Stigmas and stereotypes are invisible: that’s why I hate the invisible!

People with disabilities are often referred to as “invisible” because we don’t have the means to be heard. We don’t have the money to pay a lobbyist to hang out at the capital. They say: “we need your input” but when we offer it – our input is disregarded all in the name of “health and safety”.

Paternalism is invisible: that’s why I hate the invisible!

Away we go, trying to rebuild our shattered lives in a society that does not equip us to deal with the prejudice and discrimination we will face because of our disabilities. When we fall short of our personal expectations we fall victim to a paternalistic system that tries to fix our every move and keep us safe and not allow us to learn from our mistakes just like everyone else.

Last week, when I was job developing with a 48-year-old man who has a brain injury and a long and productive work history, and I ask the manager, if they were hiring. She has worked with our agency before so I consider her to be a lot more educated about employing people with disabilities than most in Gallup.

As I ask her about hiring Robert, she announced to me in a loud voice as she stood by the cash register, that she doesn’t have any opening right now but, “I have worked with people like that before” looking straight at Robert as if he was invisible.

Didn’t she see his shoulders slump when she uttered those words? Didn’t she see how he looked at her after she said what she said? Doesn’t she understand that words can cut deeply just like a knife and cause unseen pain that reinforces the stigmas and stereotypes we must overcome if we are truly going to become equal members of our community?

Many of my friends use wheelchairs to get around because of accidents, injuries or illness. When we go shopping in stores or go out to eat at restaurants something that usually happens is the clerk or server will ask “me” what “they” want? Sometimes they speak louder when they ask them what they want.

I guess because they can’t walk that means they can’t hear either?

How often do we hear someone call someone or something “retarded” without regard to what they are saying? This phrase is despicable and degrading to people born with mental retardation and yet we hear the “retarded” phrase just about everyday. There is a very good chance that you use this word as part of your own descriptive vocabulary.

When people with brain injuries and advocates try to educate people in our society about how this word should never be used because it hurts peoples feelings and is degrading we are faced with indifference.

Indifference is invisible: that’s why I hate the invisible!

People with brain injuries want to live just like everyone else. We don’t like to be made fun of or talked down to. Honor, embrace and value our experience and knowledge we have gained.

If you hear someone call someone “Retard” – “Crazy” or other degrading names – speak up and educate them about what they are saying. If you see someone making fun of someone who has a brain injury or retarded – speak up and tell them not to do be so ignorant!

Don’t be afraid to speak up and be heard, because nothing gets done when you say nothing and become invisible!

Holy crap – get a load of this…

Child abuse, anyone? These kids are 8 and 9 years old. Get a load of the coaches…

WATCH: Esquire reveals scary preview to show ‘Friday Night Tykes’

Thanks-thanks-thanks to the Esquire Network for airing this. Coming up on January 14… some serious sh*t to consider.

I’m not sure where or how I’m going to see it, but I’m sure the video will go online at some time.

Helping our troops during the holidays

Our troops helped us, now let’s help them

The food has been eaten, everyone has returned home, and the weekend awaits. For those who thrive on social activity, being alone after being with so many loved ones can be difficult.

Looking for a way to get out of your post-Thanksgiving funk?

Send a card to a service member. The Red Cross is having a Holiday Mail for Heroes campaign – get details at http://www.redcross.org/support/get-involved/holiday-mail-for-heroes – for folks to write cards to service members to wish them all the best for the holidays.

Each year the American Red Cross provides assistance to more than 2 million service members and many of our nation’s 24 million veterans. We support military families, military and veterans hospitals and provide emergency communications across the globe. And once a year, we get the joy of delivering holiday greetings to veterans, military families and active-duty service members at hospitals and installations around the world.

The cards and personal messages, sent by tens of thousands of Americans, provide a welcome “touch of home” for our troops during the holiday season.

Send a Card

Each year we collect cards between October and early December and then distribute them at military installations, veterans hospitals, and in other locations.

There are several ways to be part of the Holiday Mail for Heroes program. In addition to sending cards on your own, you may want to start making plans to host card signing parties or card making parties. Here are a few guidelines to help you on your way:

Card Guidelines:

Every card received will be screened for hazardous materials and then reviewed by Red Cross volunteers working around the country.

Please observe the following guidelines to ensure a quick reviewing process:

  • Ensure that all cards are signed.
  • Use generic salutations such as “Dear Service Member.” Cards addressed to specific individuals can not be delivered through this program.
  • Only cards are being accepted. Do not send or include letters.
  • Do not include email or home addresses on the cards: the program is not meant to foster pen pal relationships.
  • Do not include inserts of any kind, including photos: these items will be removed during the reviewing process.
  • Please refrain from choosing cards with glitter or using loose glitter as it can aggravate health issues of ill and injured warriors.
  • If you are mailing a large quantity of cards, please bundle them and place them in large mailing envelopes or flat rate postal shipping boxes. Each card does not need its own envelope, as envelopes will be removed from all cards before distribution.

All holiday greetings should be addressed and sent to:

Holiday Mail for Heroes
P.O. Box 5456
Capitol Heights, MD 20791-5456

The deadline for having cards to the P.O. Box is December 6th.
Holiday cards received after this date cannot be guaranteed delivery.

I’ve dug up a big box of old Christmas cards that, for one reason or another, I could not use in the past. Some of the messages don’t work for my family and friends, and some of them are extras I couldn’t use. I’m going to start writing out cards this weekend, while I have some extra time. And then I’ll send them all out in a big batch next week.

It’s a start. I can also pick up those big batches of cards that are mixed collections, and send them along as well. I’ve got almost 80 cards I can use right now — I have to pace myself, because my hand cramps up, but I should be able to make good progress by December 6th.

This is a great way for me to get out of my head and think of others during what can be a very difficult time — especially if you’re laid up in the hospital and you’ve had your career cut short by a terrible event.

Being cut off from the ones you care about most — your family, your brothers/sisters in arms, your “tribe” of choice — can feel like the hardest thing in the world during the holidays.

So, reach out and send a card to someone who needs your help and encouragement. Heaven knows, there are many, many folks like that out there.

Okay, enough about me. It’s time to write some cards.


This vacation is turning out to be pretty amazing. I’m still a far cry from being fully rested, or getting a full night’s sleep. I’ve been up late every night, under the clear night sky filled with stars, just being. Not doing. Just being. Sitting on the beach till midnight, tending a fire. Swimming in the ocean at midnight with a friend. Listening to the waves coming and going and letting go of a lot of old “stuff” that has bogged me down.

A few days ago, when I was so very tired from entertaining the lamprey house-guest, I got really caught up in some old “blame games” with my spouse. We’re lying on the beach under a clear sky, not a trouble in sight, and a lot of old resentments started to bubble up. It was definitely withdrawal from the energy I had to expend on the lamprey house-guest — and I was tired, so very tired, and agitated, too.

About an hour of an otherwise perfect day was spent hashing and re-hashing a handful of old hurts, which I now realize may not even be valid. I realize now that my addled mind got paranoid and had it in my head that some terrible betrayal was done to me… when what I have been imagining and getting resentful about may have never happened at all.

Then again, there’s a chance that it did happen, that a terrible injustice was done to me… and I would be “justified” in being hurt and angry.

But focusing on that imagined condition at that point in time, when it was not happening, and in fact it was old news… and it was a gorgeous day with ample time to rest and relax… it just didn’t make any sense. I was ruining my present moment with something in the past that might never have been real.

So, I decided to just let it go. Just. Let. It. Go. There’s no point in hanging onto that old stuff — it just keeps me from being present to, well, the present. And it gums up my system with all sorts of biochemical sludge that I then have to remove at a later time with a lot of extra work and attention.

It’s easier to just let it go from the get-go, and not get into it. Of course, take care of myself and stand up for myself, and not let people walk all over me. But not get mired in the past, when the present is calling.

We humans are funny creatures, sometimes. We need to feel validated and we need to feel like we matter. And when we get hurt, we need someone to see and recognize that. For some reason, it makes us feel better. The problems start, when we get so bogged down in that needing to be seen and recognized and appreciated, that we “take up residence” in our hurts and frustrations and pain, and we drag everyone around us down into that quicksand of pain and suffering.

We want to be seen and recognized. We want our pain and sacrifice to be appreciated and acknowledged. But then our entire lives can end up revolving around that pain and sacrifice, to the point where it gets blown up into The Main Event of our lives. We can get addicted to the thrill of disclosure, as well as the rush that comes from talking about what bad things have happened to us… and that just pulls everyone down — including ourselves.

So, I decided a few days ago to just let it go. Just live as though it had never happened. Let the bad decisions and perceived betrayals and the hurts and injuries just fade into the background… like the invented thought-forms they are. Our perceptions of life and experience are so subjective, we can make of them what we want. And once they’re over and done, they are over and done. It’s just how we “curate” them in our minds that causes us pain — how we hang onto them and nurse them back to health, just when they’re about to die out and disappear.

And what I discovered years ago, is that if I decide to live and act as though what happened has dissolved into thin air, and I choose to think and feel as though the exact opposite occurred, I can turn around my mindset and change the course of my life.

It’s not pretending something never happened. It’s not denial. It’s refusing to let unhappy events of the past continue to live beyond their “expiration date”. It’s like putting “Use By” labels on my experience, and once that date has passed, I stop opening up the old memory containers, because I know the insides are going to be spoiled and smell really awful.

So, since that moment when I decided to let that old sh*t go, I haven’t been bothered by it. Even in the moments when things have gotten weird and tense inside my head, and I’ve had time on my hands to perseverate about bad things that happened in the past, I haven’t done it.  I’ve literally just let it go.


And it occurs to me that so much of what we do in our own heads is just that — picking and choosing what we are going to focus on, and making that rule our lives and set the tone for our experience. The fact of the matter is, I’m really tired and feeling sick most of the time. My sensitivities are making me touchy and jumpy and hard to live with. And I’m in pain. But I don’t have to let those passing experiences take over my life. Every new moment is a new opportunity to experience and think and feel something completely different — something completely better.

So that’s what I’m choosing. It takes practice, and old habits of mind are hard to break — especially when they are connected with physical experience — but it’s possible. It’s very do-able.

And that’s what I’m practicing. That’s what I’m doing. I’m just dropping that old crap and moving on, using my mind to steer clear of letting my body drag me down. And in the process, my body actually starts to feel better. Sometimes. Other times, not. But whatever. At least my mind is freed.

Yeah, phenomenal.



What TBI recovery really means

Did these people stop driving because their car got flattened by a tree? I doubt it. They probably went out and got another car… and put this one up for sale.

Lately, I’ve been thinking a lot about the concept of TBI recovery. Some folks claim that there is no recovery from TBI, mild or otherwise, because the brain is unalterably changed and you can’t just go back to the way things were before.

The brain is not unlike a piece of metal, in that respect. Once you bend a piece of metal, you can never get it back to exactly the way it was before it was bent — you can get it back to the same shape, but there will always be a little wrinkle or dent or crook in it that shows you where it was damaged before. The object may be totally serviceable (like the door of my car that got side-swiped by someone who was texting while driving), but no matter how you try to pull out the dent, you’re always going to have some sort of tell-tale sign that something happened before. In my case, the car door is fine, it opens and shuts, but I’ll always have that reminder of the night that someone wasn’t paying attention as they were driving towards me.

Same thing holds true with the brain – once you’re “dinged” you’re dinged. The connections that were once in place aren’t ever going to go back to exactly like they were before. Tough nuts. What’s done is done. Your faculties may be 99% intact, but there will always be that little 1% (at least) that’s a regular reminder that things aren’t working as they once were, and you have to do things a little differently than before.

However — and this is where I differ from the experts who are riding the “no recovery after TBI” hayride to hell — just because certain connections no longer work, doesn’t mean you can’t create whole new connections that do the same thing, only a little differently. Sometimes whole areas of old abilities and ways of being are blown out, and they aren’t coming back to the state they once were. But that doesn’t mean you can’t create new connections in different ways that serve the same purpose, albeit not identical to the way things once were.

Think of TBI as a tornado that smashes the roof of your car and wrecks the roads going out of town. Combine that with a flash flood that washes out parts of the roads, too. Your car is toast. Totaled. An irretrievable loss. Everybody knows that sometimes you can’t repair a road to be exactly like it once was. So what? You take the check the insurance company sends you and you buy another car. You build a new road, you create something different. And sometimes the new road is even better than the old one. Sometimes it’s not, but it still does the trick. The new car might handle differently from your old one. The new road might take you down a longer route and it might be a little bumpier in places, but it will still get you where you’re going.

And you might get to see some different scenery, as well.

I have a theory that many (if not most) people go through some kind of major shift in the course of their lives, which causes them to rethink the routes they’ve been taking from the Point A’s and Point B’s in their lives. Whether it’s a mid-life crisis or a health crisis or an injury or a job loss or a failed marriage or a natural disaster, we all go through something like this at some point in our lives. Some of us have it happen more than once — which is not a sign that we’re total screw-ups, rather that we have even more opportunities to learn and grow and change. Even when the transitions are totally unexpected or seem to come at the “wrong” time of life — a concussion during a high school soccer game, or a car accident on the way to your vacation — they still present us with the chance to change and grow and find out what else we’re capable of doing/achieving.

Recovery from TBI, in my opinion, is no different in nature than recovering from the above “disasters”. And telling ourselves that just because we can’t get back to exactly how we were before, it means we cannot/will not recover…. that’s pretty counterproductive. And when an expert tells you that, well, it’s just ignorant and cruel and seems more like them covering their expert ass, than giving you something to work with.

Ultimately, expert advice aside, we all need to figure out how to live our own lives to the best of our abilities. If we put our whole trust in experts, who are human, we are setting ourselves up for disappointment. What matters most is what we believe about ourselves and what we believe is possible for our lives. Whether we move ourselves on through science or religion or psychology or exercise or will-power or tons of hard, hard work… or all of the above, the bottom line is, there are many ways to progress, to create positive change, and to become more and better than we were before.

It’s a process. It’s all a process. Never let anyone take hope from you, and never let anyone else define you with their own limitations. It’s bad enough that they want to do it, but you don’t have to let them.  So get up and get moving and see what you can do today. (Just make sure you eat right and get plenty of rest in the process.)

NEWS FLASH: Brain injury in high-def with fiber tracking

Amazing – this could be the break we’ve been looking for, in getting people to take TBI/concussion seriously.

U. PITTSBURGH (US) — New imaging technology will allow doctors to clearly see for the first time neural connections broken by traumatic brain injury.

High definition fiber tracking reveals loss of fibers, or connections, on the injured right side (yellow) and the intact, undamaged left side (green). The patient was injured in an ATV accident and lost function in his left leg, arm, and hand. (Credit: Walt Schneider Laboratory)

“Until now, we have had no objective way of identifying how the injury damaged the patient’s brain tissue, predicting how the patient would fare, or planning rehabilitation to maximize the recovery.”

HDFT might be able to provide those answers, says co-senior author Walter Schneider, professor of psychology, who led the team that developed the technology.

Data from sophisticated MRI scanners is processed through computer algorithms to reveal the wiring of the brain in vivid detail and to pinpoint breaks in the cables, called fiber tracts. Each tract contains millions of neuronal connections.

“In our experiments, HDFT has been able to identify disruptions in neural pathways with a clarity that no other method can see,” Schneider says. “With it, we can virtually dissect 40 major fiber tracts in the brain to find damaged areas and quantify the proportion of fibers lost relative to the uninjured side of the brain or to the brains of healthy individuals. Now, we can clearly see breaks and identify which parts of the brain have lost connections.”


After the Crash

RIP Sarah Burke (September 3, 1982 – January 19, 2012)

The Concussion Blog had a good post the other day — Action Sports an Issue Too — with a couple of videos that have really haunted me since I watched them.

I’ll show them again here:

There’s some mention at The Concussion Blog about high impact falls and the fencing response (which everyone who plays sports and is concerned about concussion should be aware of), which is good food for thought.

And it really did get me thinking. Because looking at Mr. Huston taking those falls, then lying there for a while and shaking himself off and jumping up to have another “go” at it is exactly the kind of behavior that gets so many of us into trouble.

I’m not sure if it’s the sudden release of glucose into the brain cells, or the whole rushing extended metabolic cascade of concussion that makes those neurons fire like crazy, but there’s something about getting hit on the head — and I hate to say it — that makes you want to go at things even harder. Perhaps it’s an evolutionary development from days of yore when warfare was largely hand-to-hand, and head trauma was just another part of the fight… and if you got hit, you couldn’t just lie there and wait for your opponent to make mincemeat of you. You had to jump back up and go at them even harder than before. Consider the eons of warfare humanity has been embroiled in, practically since the beginning of time. If darwinistic evolution has anything to do with how we’ve evolved as a species, and if the ones who could rebound after a blow to the head and keep fighting to the win, no matter about the dizziness, nausea, blurred vision, light sensitivity, cognitive deficits, poor risk assessment, etc…. and procreate along the way… and if the children inherited the qualities of their warfaring sires… then it makes sense that we would be in the situation we’re in.

‘Cause people have been running around, getting in fights, slugging each other over the head with sharp and blunt objects, and basically, wreaking havoc with the hidden grey matter since before recorded history. And if we as a species are conditioned to bounce back up and head back into the fray, well, then, it makes sense that Nyjah Huston is falling and hitting his head, apparently sustaining obvious concussions in the process (as indicated by the “unnatural position of [his] arms following a concussion. Immediately after moderate forces have been applied to the brainstem”), lying there for a moment or two to collect himself, then hopping up, grabbing his hat and board, and heading back up to the top of the stairs to try again, regardless of the “overt indicator of injury force magnitude and midbrain localization”.

Says Nyjah, “It normally takes that one fall in a trick like that to, thought, ride away and kinda like realize what you have to do to actually land it. And yeah then after that one that I rode away on, the next one was perfect, and it felt so good riding away from it after that battle.” (See the Berrics video at 2:19 to hear the roar of the crowd — which is really what so many of us want, right?) And all the while in the background, a band is playing “Well, you’re gone, you’re gone, you’re gone, you’re gone, you’re gone, you’re gone, you’re gone / But you went on and on and on and on and on and on and on and on…”

And so it goes. We fall, we get hurt — sometimes seriously (whether we know it or not) — but we get back up and run right back into the fray, regardless of possible consequences.

And the crowd cheers.

Because we value “resilient” athletes of all kinds, and we applaud them to no end when they actually succeed at the things they’ve practiced, over and over again. We value “resilient” employees and individuals who can “take a licking and keep on ticking”. We reward people who make sacrifice after sacrifice for the greater good, even when that “greater” isn’t so good. Even when it’s something as transitory and non-essential, like a Saturday afternoon ball game. Not that sports don’t matter – they certainly do. But is the temporary distraction of fans from the humdrum, sometimes uncomfortable facts of their lives as equally important as the long-term health and well-being of the athletes at play?

At what point does entertainment — and that’s what so much of it is for spectators — become more important than the health and safety of the entertainers.

Granted, entertainers and performers of all kinds have a long tradition of taking risks for the enjoyment of the crowds. Think high-wire acts, trapeze artists, bullfighters, bull riders, and people who play with fire to please an audience. In some ways, entertainment and distraction are as vital to human survival as food and air and water. We have to have them, or we wither amidst the constant rigors of the everyday. Something has to keep us going through it all. So, we have our sports and our games and our shows and YouTube and Twitter and so on.

And in watching those games and shows and performances, we learn lessons about what it means to be human, what it means to struggle to overcome adversity, be resilient, and keep on. We get reinforcement for our values, and we cheer on those people who support our values and demonstrate successful practice of the qualities we value most — the ability to take a hit, the ability to jump back up after a particularly hard fall, and get back in the game, not letting anything stop us.

Once upon a time, I was like that. I would get hurt, and I would jump right back into the fray. I wouldn’t take any time off, I would just push myself, no matter what. I would crash — and sometimes burn — but I’d be back eventually. Before anyone even really noticed I was down for the count. And I kept getting hurt. Like Nyjah Huston, I would lay low for a short while, then gather myself and plunge right back in. I kept recovering as best I could, then rush back into the action — in sports as well as in life. Knocked down and way woozy for a while? No problem. Just prop me up and turn me loose again. Smashed up in a car accident and unable to read with comprehension or understand what people were saying to me? No worries. Just give me a few days and a job change, and I’ll be right as rain before you know it. Went down a flight of stairs and smacked my head hard and can’t talk or think straight? Forget taking some time out. Let’s just get going — and move even faster than before.

That was pretty much the story of my life until 2007, when I started to notice that things were falling apart, and I didn’t understand why. Then it all caught up with me. And the rest is history. Here I am, working at rebuilding my life as best I can — and finding ways to do even better than rebuild — to actually build from the ground up, in so many ways.

In a way, what I’m doing now is a long, protracted rebound from the extended fall(s) I took over the course of my life. And this time I’m doing it a lot better than ever before.

Because I’m taking time off. Not 100% out-of-commission time off, but I’m stepping back from the crazy rush of everything, moving at a more sensible pace, and I’m not letting everyone else drive my action. It’s been an incredibly difficult change to make, but it totally makes sense for me. It’s a shift away from the reactive to the active, a move away from letting others define me and my life goals, and going with my gut — what I want and need, not what other people tell me I want and need. I’m not pushing to reach some brass ring that’s forever out of reach. I’m backing off… being more introspective about my approach… and giving myself time to come up with answers that make sense to me, not just the rest of the world.

It’s an entire life change, which hasn’t been easy. But it’s been necessary. And long overdue.

After the crash, when you take a hard hit, it can be a really good idea to step back, reassess, and only return to play after getting to a place where you’re truly good to go. If you got injured pretty badly, it may take some time to get back to that place, but you’ve got to resist the temptation to race right back into the fray without giving your body and mind some time to recover. If you take time off, you may actually figure out if you’re hurt, and how badly, and what you need to do to get back into decent working condition. But you’ve got to give yourself a chance to catch up with yourself. You’ve gotta be smart and self-defensive, not succumb to the pressure of the cheering crowds which can push you out into dangerous situations all over again.

Now, you can’t just sit out indefinitely, losing your conditioning and your abilities by being over-protective. And you can’t run away from the urgings of others, who may actually see things in you that you don’t see in yourself. That’s another danger that’s very real and present, and I’ve seen a lot of people pass up great opportunities in life because they were afraid they weren’t ready or up to it. At some point, you’ve got to find it in yourself to move on and act on opportunities as they arise, provided you’re up to it.

If you don’t, then brain injury has taken over your life, and you’re a hostage for as long as you let your fears dictate your future.

Now for the disclaimer: For brain injury survivors, self-assessment and accurately gauging the levels of your abilities can be extremely difficult, if not impossible. So, you may find yourself in “interesting times” as the Chinese phrase it, with all hell breaking loose, thanks to disconnects in your abilities vs. interests. It can be helpful to have the input of others who are realistic as well as supportive. Indeed, taking steps to get back in the game may in fact reveal that you’re better off not getting back in the particular game you want to rejoin. Self-reflection and objective observation of real feedback about your life and your abilities may show that you should find a different game — metaphorically choosing tennis or golf, instead of ice hockey or football. Whatever you find and whatever you choose, the important thing is to not get STUCK in one place, and to NOT GIVE UP trying to find a different way. The brain is a big place with tremendous plasticity. And history has shown that even significantly injured individuals have recovered and developed abilities that nobody expected or realized they had.

It’s a balance. And it’s a very hard balance to strike.  Especially after the crash, when your brain is telling you go-go-go… not necessarily for any particular reason, just to GO… and the rest of the world is cheering you on, urging you to get up, dust yourself off, and jump back in the action ASAP.

So, how DO I tell if I’m hurt?

I’ve been taking it easy, the past few days, trying to settle my nerves after that last fall. It was more like a slip-and-collapse than a fall, really. I think I did the right thing by just letting myself go down, instead of trying to break my fall. Still, I did hit my head, and I’ve been a little “off” ever since.

I really think it’s just nerves. Anxiety fiddling with my head. I’ve been a little uncoordinated, a bit edgy, and I haven’t felt quite like myself. But I’ve been working like a crazy person, lately, putting in super long hours, and that’s got to have an effect on me.

It couldn’t ALL be the fall.

Anyway, it’s been a challenge, figuring out whether the problems I’ve been having have been because I really got hurt, or I just got scared. The aches and pains and bruises on my arm are clearing up, but I still have this painful knot on the side of my head that bothers me when I touch it. I try not to touch it, but I also like to check in and see how it’s doing. I expected it to go down sooner, but it’s still bothering me, still feels tender.

I see my neuropsych tomorrow. They may be able to tell me something about that. Or not. They’re not a doctor, after all.

This is the big problem (for me, anyway) with head injuries — how do I tell which of my problems are neurological, and which are psychological, and which are physiological? I’ve definitely been “off” since the fall, and I think it may have plenty to do with anxiety, nerves, being worried about getting hurt. And also feeling stupid about falling in the first place.

Then there’s the physical problems — being off balance because I wrenched my shoulder and neck, and my muscles are not balance the way they usually are.

Then there’s the psychological stuff, the anxiety and nerves. The sick sinking feeling of helplessness as that slow-motion action happens and I can’t stop myself — or things happen so fast, I don’t have time to stop myself. Sense of helplessness. Loss of control.

Well, I’m tired. I need to go to bed. I try not to think about it too much, but what if I’m actually hurt?