10 things I wish someone told me after my TBI

Top-10

If only I’d known…

Update: August 24 – I have written expanded explanations of each of the 10 points below. They are linked, so you can read them as I post them.

These things took me years to learn. Actually, people knew them, but nobody thought to tell me. And the people who knew them, either didn’t tell me right away, or were not within reach of me.

Now, thanks to the interwebs, I’m passing them along. And I’m writing a short guide for people who also need to know this. It’s not long. It will have pictures. It will be basic and (hopefully) easily digestible, so even a “freshly” concussed person can use it.

Here they are:

  1. You’ve had a brain injury. The connections that help your brain think may have gotten disconnected and information isn’t getting to the right places — like when electrical wires are frayed and not enough electricity gets through. Just like the lights get dim when there’s a brown-out, your brain is having its own brown-out.
  2. When the brain is injured, it can release a lot of chemicals that do strange things to the connections that help you think. There may be a lot of “gunk” in your brain that needs to be cleared out, so that your connections can heal and be repaired.
  3. Your brain has changed. The connections that used to get information from one place to the next have changed, and your noggin isn’t processing things as fast as it used to.
  4. Your ability to plan and follow through may be affected — you may find pieces of information missing, here and there, and you may not pick up on every detail that you need to make the right decisions.
  5. You are probably going to be more distracted than usual. Your brain will get confused and not always know what details it should be paying attention to, or remembering. As a result, you might have more trouble remembering things — especially important things, like dates and schedules and appointments.
  6. All of this is going to make you feel very, very tired. You may need to sleep more than usual. Sleep also helps your brain clear out the gunk that gets released when it gets injured.
  7. Being tired makes you cranky. It also can make you more emotional than usual. You may find yourself behaving in “strange” ways, or thinking “strange” things. You may also find yourself getting much angrier than before — and much more quickly than before.
  8. You might feel like you are crazy… like you’re losing your mind. You’re not. Your brain is just “recalibrating” and figuring out how to do the things it used to do so easily.
  9. You may feel like this for a while. The best thing you can do is be patient with yourself and be aware of the ways that you are not functioning as well as you would like. Don’t rush it. These things take time. Eat healthy food, stay away from a lot of junk food, sugar, caffeine, and stress, drink plenty of water, and get lots of good sleep.
  10. Plenty of other people have had brain injuries / concussions, and most of them are getting on with their lives. You may notice some changes in your personality and abilities, but some of the changes may be for the better. Be patient. Pay attention. Be the best person you can. This is not the end.

Week “off”. Nice.

I have no appointments this week. That means I have something like an extra eight hours to do what I please, whenever I please. No running out of the office to meet someone else’s schedule. No getting home late, eating late, and collapsing in bed like a dead person. None of that.

Starting next week, I’m putting in a strict limit on the number of appointments I have to two a week. Less, if at all possible. I just get too tired. And it doesn’t leave me much time to relax and do the things I want to do, at my own pace.

Peace

 

 

 

 

Doing it ourselves… anyway.

If only there were a team... Most of us have to figure it out ourselves.

If only there were a team… Most of us have to figure it out ourselves.

After my rant yesterday about how rehabs let people go without training survivors and/or family & friends about the cognitive impact of concussion / TBI, I have mixed feelings.

I do believe that it’s incumbent upon people put in charge of us to do their utmost to help — at least not hurt. And despite the many challenges of figuring out how/when to return to play, work, or learning, I do believe there is enough knowledge in the healthcare field to put together at least a modicum of information that will better inform people who are being discharged.

There are a lot of smart people out there, running around in healthcare, and I don’t for a moment believe that it’s impossible for them to see the forest for the trees. That’s what ends up happening with concussion / mild TBI discussions. Everyone is so focused on the ways that people and brain injuries are different, that they completely miss the commonalities and the ways that make every head injury the same.

Namely: The very action of concussion produces specific results — releasing biochemical havoc into cells that either seriously disrupts their activity or actually kills them. It twists and shears and bruises the myriad critical relationships between interdependent connections in the brain, and it makes your cerebral matter respond differently than you’re used to.

Depending on where you got hit or hurt, your executive functioning — your ability to think things through and make good decisions — can be seriously impaired. It’s due to the brain being injured, and anxiety and problems with impulse control also play a role. Also, the speed with which you process information and your ability to react (through physical coordination or making a good decision about what to do) can be altered.

You don’t react as quickly as before, to that oncoming ball or hit. You don’t respond as quickly as you should when the police officer asks you a question. You make poor decisions and take poor action about what to do in response — you fumble the ball, or you start yelling at the officer.

So, you can get yourself in trouble, all over again. You can make terrible choices that put you back in danger’s way — and put you in even more dangerous situations. Unless you — and the ones who care for you — understand that basic fact, getting patched up and being sent back out there again before your brain is back on its proverbial feet, is just asking for more trouble.

You hop back on the skateboard or snowboard before you’re ready.

You start playing football or soccer or lacrosse before you’re physically ready.

And you get hurt again. This time, worse. And repeat concussions are nothing to laugh off.

Explaining that to people may seem like a vain prospect, and maybe it is. Maybe it’s true that nobody wants to listen, and nobody takes mild TBI seriously. Maybe healthcare folks think that concussion takes care of itself, and all they need to do is rest and take it easy. But people are missing the fact that not only does TBI affect your ability to function well — it can also make you incredibly literal, stubborn, hard-headed, and single-minded. Your thinking can get incredibly rigid, and you think that the only option for you is to get back in the game as soon as humanly possible.

Our medical system in the States is designed to treat and release. Patch us up and send us back out there. It’s not geared for long-term help.

So, we have to take care of these things ourselves. No matter what. Any way we can. We have to educate ourselves about concussion and TBI and what it means. We have to care for ourselves and recover on our own. We have to dig and dig and dig till we find the answers we need. And we have to do it on our own dime, without much help from anyone, really. Every now and then, someone comes along who can help, but those people are few and far between.

It’s actually much more reliable to use the Internet and surf the web, looking for information from others who have been through it… or professionals who post useful books and papers and studies online. In some cases, we have to get “creative” to find the help we need.

But we do what we must. Because the system as a whole is not designed to actually help us beyond getting us back on our feet. The whole rest of everything is on us.

For better or for worse.

The #1 Failure of TBI Rehab?

We need better ideas about TBI / concussion recovery

We need better ideas about TBI / concussion recovery

I woke up thinking about the BBC documentary “Me And My New Brain“, and I quickly got very angry.

It’s early here, so I know I need to be careful about letting my anger get the best of me. I sometimes use it as a mechanism to wake myself up, and that’s not a great strategy.

The thing that gets me, however, is not a trivial thing. And someone needs to take issue with it.

The #1 Failure of TBI Rehab (which I have heard about many times), is only taking care of the brain on a physical level – only patching things up and sending people back out into the world to fend for themselves without an understanding of how the TBI affected them, and how it can cause them to make poor decisions and take risks, which can ultimately lead to additional injuries — the latter ones even more serious than the last.

I am thinking especially of Kevin Pearce’s parents (see The Crash Reel), who let him back on the slopes after he nearly died. I haven’t the faintest idea why any parent would do that. But maybe they just didn’t know. Just like they probably had no idea what repeat falls and knocks to the head would do to him, in the first place.

It’s unconscionable. Inexcusable. A way needs to be found to communicate with people the gravity of their situation. Even if they are supposedly unable to understand their own injury (which I think may be debatable), the other people around them need to be educated. Parents. Teachers. Friends. The whole community around them needs to be educated.

And the fact that this is not being done is a travesty and one of the biggest damagers to community that I can imagine.

It also sets everyone up for more pain and additional TBIs / concussions. Because the kinds of problems you have with brain injury make you even more disposed to getting into situations that will cause more.

It makes no sense to me. None, whatsoever. It’s not like we don’t have this information on hand. It’s not like nobody knows this. But where’s the uniform approach to treatment — just like you have a uniform treatment for a subdural hematoma — bleeding into the brain. You remove part of the skull, remove the hematoma,and when the bleeding has stopped, you put it back together (or thereabouts).

The crazy thing is, getting education out to people is a very inexpensive and straightforward thing to do. It’s not like conducting brain surgery on the whole population. Why is that millions of people know about the Kardashians in excruciating detail, but precious few know about brain injury? It makes no sense to me. The right educational materials, placed online, can get into the hands of millions. Seriously, it happens everyday. Why not do it with brain injury education?

Instead, we have organizations spreading fear — terror — about the dangers of repeat concussion. We have individuals with high profiles taking extreme measures. We have people who live in extreme conditions (pro football players) acting as role models for people who will never, ever reach the level and frequency of head trauma that NFL players do… yet who have considerable and serious issues because of “just a bump on the head”. We also have folks out there raising awareness about the problems that come from TBI – but where are the solutions? Where are the strategies? Where are the detailed stories of people who have really overcome? We live in a world of soundbites and personal branding. What can we expect to accomplish in an initiative that demands more than 15 seconds of thought and objective, pragmatic information?

As for those businesses that DO create the information, they tend to do it for a premium — and the costs are prohibitive for everyday folks who are struggling to get by. It’s one thing to create materials for doctors or other providers who can expense it for their business. But the legions of everyday people who can’t… it’s just not going to be accessible to them.

And considering how much TBI and concussion costs us as a nation — and a world — you’d think that someone would have done something about that, by now.

Well, I’m still tweaked — that’s just gotten worse. And I need to go to work. I’m giving myself a headache, so it’s time to breathe and relax and get on with my day.

But really, something needs to be done.

Cleaning up my act, uncovering potential

Sort of how my space looks - better in some ways, worse in others

Sort of how my space looks – better in some ways, worse in others

I’m entering week 4 on the new job, and it’s been going well. I’m settled in there, and I’m adjusting to the new schedule pretty well. It’s taking a lot more out of me than I would like, but that’s a combination of the commute and the nature of the work. It’s a very social workplace, which is a huge challenge for me. I prefer to tuck myself away in a corner and noodle on problems, but the whole new job thing is really structured around interacting with a lot of people to solve problems together.

So, it’s good practice for me. Keeping to myself tends to get me down, in any case.

I find myself and my priorities really changing dramatically. I have let go of a lot of the old projects I had waiting in the wings for so long. All in all, I had over 5 different mega-projects that I was actively working on. I was making good progress, too. But now they just don’t matter to me as much, anymore. I think it’s a result of now doing work that actually interests me and is a good match for my personality and skills. All the crap-jobs I’ve had over the years that never challenged me or made the most of my abilities necessitated me looking elsewhere for satisfaction and fulfillment.

I simply could not keep my spirit alive, doing those past jobs without plenty of side projects.

Now, however, I am suddenly feeling no interest at all in those mega-projects. I have pretty much lost interest in them, and all I really want to do now is focus on my day-job, take care of things at home, and live a simple, uncomplicated life.

What a change this is.

And I look around my house and see that I really need to get my act together. Some rooms look like a herd of water buffalo have stampeded through and churned everything up. I’ve got “stuff” from multiple projects lying around in piles, and leftovers from various endeavors scattered about in general disarray.

Precious little of it interests me, anymore, and I really need to clear it up.

I’ve been needing to do this for quite some time, actually. I just couldn’t figure out where and how to start.  Getting started (initiation) tends to be a big problem for me. I get stuck on the simplest things… and then I get down on myself for not being able to start.

But start, I must.  Just dig in, somewhere, and make a start. I have a whole 4-drawer filing cabinet in the corner of my office, just waiting for me to fill it with crap. Some of the drawers are mostly empty, too. But I’ve been stuck. Just looking at the filing cabinet makes me anxious. What if I can’t finish? What if I get turned around and confused, and the end result is worse than when I started? How do I handle this? What can I do?  It’s frustrating and confusing… so I end up doing nothing.

Plus, in the rest of my life, there are a ton of leftovers that are making my life more complex than need be. My winter cleanup clothes from six months ago are still hanging on the backs of dining room chairs. And there are all kinds of boxes from things that came in the mail, just lying around. Birthday and Christmas presents are still sitting in the living room in their gift bags.

Clearly, I need to take some initiative. It doesn’t help that my spouse is declining cognitively, and they add to the problems by just tossing stuff around (their post-stroke, diabetes-influenced issues with initiation and executive function make my challenges look like child’s play – but that’s another post for another time).

And now that fall is fast approaching, I don’t really have much excuse for not sorting things out. It’s fall cleaning time. And magically I am finding more interest and more opportunity for tending to business at hand. The enduring, years-long obsessions with those mega-projects has flown out the window. I frankly don’t give a damn, anymore. They were just windmills I was tilting at for no good reason other than to soothe my anxiety, and now that I’ve got a real job that really uses my skills and abilities, I don’t need them, anymore. They served their purpose.

And it’s time to clear them away.

For good.

There is literally so much stuff in my house that needs to be organized, that some rooms are bordering on hoarder status. Then again, they’re not. We don’t have  piles and piles of crap we never needed and will never use again, that we collected due to severe mental illness or profound impairment. We have piles of crap that is/was useful, and is just poorly organized.

And that’s fixable.

So, right now, as I stand up and get ready for my Sunday morning walk in the woods, I’ll grab just a few things to move to where they really belong. A little work can go a long way, and each day, I can do something that will help. It doesn’t have to be “big bang” to work. Little “bangs” will work just fine.

The space that gets cleared, will make room for more space — different activities — a simpler life. That, in itself, is well worth the momentary confusion and disorientation. The anxiety will work itself out.

And so it goes.

Onward.

Concussion a disproportionate health care cost to society – WSU News Washington State University

Concussion a disproportionate health care cost to society – WSU News Washington State University.

SPOKANE, Wash. – Traumatic brain injuries (TBI) in children are costly to individuals and society. A new study shows that, though moderate and severe TBI cost more for the individuals involved, there are so many more cases of mild TBI, such as concussions, that their cost to the general population is much higher.

“Mild TBI cannot be thought of as a low-cost or short-term problem,” she said. “The study demonstrates that concussion costs account for a disproportionate cost burden at the macro level.”

… Read the rest here >>.

My comments:

And this is just for the insurance claims. The total cost – in terms of long-term impacts to social and cognitive functioning, behavioral problems, and mental health – is much higher, I’m sure. “Mild” TBI is mis-labelled, and thus misunderstood. There is nothing “mild” about it, when the symptoms persist and wreak havoc with your life and the lives of your loved ones.

That cost – in total – is incalculable.

After the Hit – Falling Down Stairs at Age 7

The kind of stairs we had when I was young

This was the first fall that rattled my brain that anyone in my family remembers. My mother still talks about it to this day. She was in the next room when it happened. The possible anoxic brain injury I sustained as an infant is another frequent topic of conversation, but she wasn’t there when that happened, so this is the one she brings up the most often.

The house where my family lived, till I was 10 years old, was small. Realtors would call it “cozy”. There were three bedrooms upstairs, and three rooms downstairs – living room, dining room, kitchen. Upstairs and downstairs were connected by a short flight of stairs – about 10 carpeted steps and not very steep – that had a landing near the bottom and a few more steps angling into the far corner of the dining room.

I remember standing at the top of the stairs one afternoon… and then I found I was at the bottom of the stairs, lying in a dazed heap. I couldn’t figure out how I’d gotten there. I was dazed and rattled, and I didn’t feel right. I got up and went to stand in the middle of the dining room, to “check in” with myself and see if I was alright.

I knew I wasn’t badly hurt. I could move my arms and legs and fingers and toes. I wasn’t in pain at all, that I could tell. So, I knew I was basically okay. Still, everything felt weird and far away, like I was at one end of a long, narrow, dark tunnel, and the rest of the world was at the other end…. Or like I was encased in a thick translucent bubble in the middle of a fog. Everything outside my “bubble” seemed foggy and distant, including my mother’s concerned calls from the kitchen. It was the strangest feeling — I was there, but I was not there. I could move my arms and legs, but I felt completely disconnected from my body, like I was moving it by remote control. I wanted to respond to the distant calls, but I was so confused, so dazed, and so wrapped up in figuring out if there was anything wrong with me, I wanted the voice in the distance to go away.

Now.

My mother had heard the racket and was alarmed. After calling out to me and hearing no response, she rain into the dining room to see how I was. She tried to touch me, to see if I was alright, but I pulled away and wouldn’t let her near me. She frightened me, coming that close to me so quickly, and I couldn’t stand the feel of her touch. Her touch felt like a slap — like a sudden flash of lightning and a thunderclap on an otherwise clear summer’s day.

She kept saying, “Are you alright? Are you alright?!” But I couldn’t answer her. Her voice echoed in my head and hurt my ears almost as much as her touch hurt my arm. It sounded like I was deep underwater, and she was calling to me from far above.

All I could say was, “It was me.”

She kept trying to check if I was hurt, and everytime she made contact with me, it hurt. I pulled away – away – away – and remained silent. I just wanted her to leave me alone.

Alone. Alone.

She did leave me alone after a few minutes, and I remember standing still for a while longer, until my body felt like it could move on its own, without me commanding it. Then I walked away. After that, my memory fades to nothing.

I think this was the first of the really significant hits I took, when I was a kid. It’s certainly the one that can be testified to by someone other than myself. My mother has an excellent memory for these kinds of things — possibly because of guilt she feels at why it happened, or how she handled it afterwards.

There was nothing she did that caused it. We kids were always racing up and down those stairs, sliding down them, and generally treating them like our “jungle gym”. We weren’t allowed to slide down the banister, which was for the best. If I had been, I likely would have fallen off it – and hurt myself badly in the process.

To say that my sense of balance was “poor” would be an understatement.

Not that it slowed me down, all that much. I just kept pushing through.

After the Hit – Age 4, Possible Fall Off a Chair

big-chairThis is an injury I cannot 100% confirm, but much about what I recall fits the description of what happens to a kid before, during, and after a concussion from a fall.

I was placed in a daytime childcare setting with another one of my siblings, when I was about 4 years old. Both my parents were working to make ends meet, so I was in childcare till I entered kindergarten.

This fall happened in a house that was filled with kids. The big kids went up stairs, and the little ones stayed downstairs where the caretaker could keep an eye on us. I always wanted to be upstairs with the big kids, but I knew I wasn’t allowed up. One day, one of the “big kids” encouraged me to come upstairs and join the fun. I was a small kid for my age, but I had a big heart, and I wanted to be part of the fun. So, I snuck upstairs with the other kid, and I got to play.

The game that day was climbing onto chairs and jumping, as though we could fly. I had always been a climber (I climbed onto the top of our refrigerator when I was 2, and I downed a whole bottle of tasty orange-flavored baby aspirin). So this came naturally to me. Along with the other kids, I climbed up as high as I could go, and I jumped. One time, I landed wrong – maybe my head hit something? And the next thing I knew, one of the big kids was running downstairs calling for our caretaker that I needed help.

I remember a lot of confusion and yelling. I wasn’t supposed to be up there. I dimly remember getting a concerned talking-to, but most of the yelling was at the other kids for inviting me up there. My mother was called, and she came to pick up my sibling and me. There was worried, hushed adult back-and-forth talk, with a lot of apologies from my caretaker. Then I was taken home.

After that, I was determined to go back upstairs and join the big kids again. I couldn’t get it out of my head. My caretaker had to keep an eye on me, or I’d be back upstairs. Nothing they said to me would stop me from wanting that. I wanted to climb. I wanted to jump. I wanted to fly. If it’s possible for a young kid to perseverate (get stuck on one idea and not be able to let it go), I fit the bill. In addition, I was subject to crying fits, where I could not let it go. I just could not. I would cry and cry and cry inconsolably. Nothing could stop me. I would just cry.

This happened at the caregiver’s place where I’d fallen. And it happened in other places and times when I was tired and overwhelmed, too. Once, my mother had to pick me up from childcare and take me home, because I was impossible to calm down and I was being too disruptive.

I didn’t want to be in that house, filled with all those rowdy kids, all that noise, and all that activity. But if I had to be there, I wanted to be upstairs with the big kids — jumping off chairs and getting as close to flying that a 4-year-old can imagine.

Whether I like it, or not

What I need right now, is some music.bartleby-imageAnd that’s what I’m getting. I’m now plugged into Pandora and gettin’ my groove on.

I’ve been lolling around the house for the past couple of hours, reading and making myself a late lunch. I’ve been eating candy, because my energy is really low, and I can’t seem to work up the enthusiasm for much of anything other than sweets.

I burned through the last of the candy that interested me, and now I’m eating a big glob of peanut butter and honey all mixed together. Some frozen mango chunks are thawing nearby, and I’ll have them later, for a “healthy” snack.

After the mention from a reader, earlier today, I checked out the Herman Melville short story Bartleby the Scrivener, which I have heard about in the past. Heck, I may have even read it at one time, but I can’t remember having done that. Doesn’t mean I haven’t. I just have no recollection.

It’s Saturday, and I feel an odd combination of relaxation and ennui. I’m feeling a little like Bartleby, who “preferred not” to do common-sense things. It’s also a hot one today, and I am still feeling wiped out from my week, even after a morning nap. I have been keeping off Facebook, but I did check out Twitter earlier. So much talk — arguing — controversy — fear — anxiety — pressure… football season is up on us. Kids are going back to school. It’s all building to a fever pitch.

It’s a wonder any of us can hold a conversation with anyone. All the pro/con conflicts and ideological jousting… good grief. I get depressed just looking at all the tweets. And I’d prefer not to deal with it, right now.

But I must deal. Because I’m involved.

Deeply.

I’m one of those kids who was repeatedly hurt in sports and a generally active / action-packed childhood, who had a ton of problems as a result, and those problems followed me like stray pets that got dumped at the local 7-11 and found out I’d feed them. So, they followed me around for years and years.

I’m still hassling with them. Less now, than only a few years ago… but they still crop up.

And I cannot help but think back to how it was for me — even as the memories fade (as they tend to, with me)… even as the particulars about my past become hazier, I still remember how it felt. And I still remember what it was like to get hit, to love getting hit, loving that feeling, and jumping up to dive back into the fray for more.

I need music, today. I need something to keep me moving and get me out of my maudlin head. I need something that will move me forward with the plans I have. I need to work towards finishing TBI S.O.S. and then get on with finishing the book I started about the connections between TBI and PTSD.

I also need to continue work on “After the Hit”, which is about the experience of getting hit, getting concussed, and how it really affects you immediately after you get “dinged”. That, to my mind, is a serious consideration in the struggle to deal with concussion — the under-reporting, the concealment of symptoms, the types of behavior and play that contribute to this ongoing issue.

In my experience, the problems that come along with concussion — the fogginess, the distractability, impaired risk-awareness, impaired judgment, having all your filters being blown to smithereens, and being overwhelmed and inundated by SO MUCH STIMULI — sets you up for more concussions, because the one thing that will take the edge off, is another blow to the head, which fires off all the mechanisms that send your system into hyperdrive and also block out all the noise, the chatter, the competing information. It may feel good at the time, but the long-term results really do suck.

I used to play to get hurt. It was the only thing that would stop the noise. It was the only thing that made me feel sane again.

And that’s depressing me. I’d prefer not to think about it. But if I don’t.. and if I don’t at least say something about it, then I’m helping the problem to persist. People have to know about this hidden piece of the concussion puzzle. We need to appreciate just how big a role that wanting to get hurt has in unsafe play — and risk-taking of all kinds post-concussion. And we need to not just medicate or institutionalize a response, but come up with some healthy alternatives that harness that knowledge and use it for good — not just prescribe a handful of pills to make the problem go away.

Argh! That maddens me. All the meds… given to people who are extremely sensitive to them, thanks to their injuries… pharmaceuticals that sometimes only make things worse, because they do the exact opposite of what needs to be done for someone with a mild TBI / concussion.

But I can’t let it get me down. I’ve got my tunes on, and it’s good. I just have to get myself in gear.

Or maybe go back to bed?

Heh. Which would I prefer? I should probably do the opposite.