From Brain Injury and Football — No Place to Run — on CRAIN’S COMMENTS

concussion_nutrition

The latest evidence is pretty hard to ignore. The research leader is Dr. Ann McKee, chief of neuropathology at the VA Boston Healthcare System and director of the CTE Center at Boston University. She examined the brains of 111 deceased NFL players. Of these, 110 had CTE, the degenerative disease caused by repeated blows to […]

via Brain Injury and Football — No Place to Run — CRAIN’S COMMENTS

The things I need to know, to move forward

two rock climbers on climbing wall

So, the session with my neuropsych (NP) went well yesterday. We actually sat down and went through the data from my prior two evaluations, and I got to refresh my memory about what’s going on with me behind the scenes.

The things that jumped out, which are measurable problems are:

  • processing speed
  • visual memory problems
  • resistance to short-term interference

We talked a bit about these issues, and I got a clearer view of what actual difficulties I have. I struggle with certain things all the time, but I don’t always have a clear view of why that is. Maybe it’s my processing speed. I don’t seem to put things together right away, so I often don’t even realize that I’m struggling till later.

The idea that I’m slow doesn’t make me very happy. I’ve got “superior” intelligence, but my speed can be glacial at times. That puts me at a disadvantage in the speed-addicted world, where everything happens at high speed. It also doesn’t help me in social situations, where people gauge your intelligence by how quick you are. Obviously, that’s not a fair comparison. But that seems to be the public bias.

The thing that bothers me more is the visual memory thing. I tend to think of myself as a visual thinker, but maybe that’s not the case. My memory was the worst, when I was trying to remember pictures. I forgot things pretty quickly. Like they’d never even existed. Compared to my verbal memory (which also kind of trailed off at times — I lost track of important details), it was a lot worse.

I need to dig into this more, because I think this may be why I struggle with some things I really, really love. I’m an “anatomy geek”.  I love to study pictures of human anatomy — feet, hands, shoulders, backs, legs, torsos, internal organs, the nervous system, even the musculature of the head. But for some reason, no matter how hard I study, no matter how hard I try, I can’t seem to keep the images in my head. I tried to become a personal trainer, years ago, and the reading materials were fine. But I couldn’t get the anatomy piece.

Maybe that’s why. If that’s the case, I need to either stop getting all these atlases of the human body, thinking I’m going to memorize them all… or I need to find another way to study. I’m not willing to let go of my love of the human system, so I’m not going to give up my atlases. I just need to find a new way to memorize. And not just memorize, but really understand how things are put together, using all the tricks in my toolbox.

My first NP was pretty intent on making sure I didn’t get down on myself and think less of my abilities. I have a tendency to focus on the things I do wrong (I was raised that way, actually), and that can really drag me down.

Now I really need to work with my issues in a more focused way. I know the numbers I’m looking at are old — the last eval I had was about 5 years ago. I should really get a new eval, but it costs a lot of money, and my insurance won’t cover it. So, unless I come across an extra $5K that I don’t need for something else (and wouldn’t that be wonderful), I’ve got to work with what I have. Too bad. I’m stuck.

Then again, I’m not that stuck. I can still observe what’s going in my life, see what’s causing me problems, and deal with that. I have a lot going on, so it can be a bit of a “dust storm” with lots of competing information, and I may not always be able to make distinctions. But at least with the handful of issues that my NP eval has identified, it gives me a handhold.

All of this can be like standing in front of a rock wall, trying to figure out where to grab onto first, to start climbing. All I need is a few tips and hints.

Then I can get started.

Moving up.

Onward.

Upward.

Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…

Who’s stopped by in the last month

picture of world readership from the last 30 days
Who all has stopped by in the past month

I just checked my stats from the past 30 days, and it looks like word has gotten out about this blog. Or people have been finding their way here. The breakdowns of countries are below – this is just the past 30 days, but the range of countries is pretty extensive.

world readership statistics from the last 30 days
The full list of visitors from the last 30 days

Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
fireball explosion
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
galloping horse
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

Into the bleak mid-winter

winter sunset with geese flyingI have a confession to make. I love the bleak mid-winter. There’s a hymn about it, that sounds like a funeral dirge. The first verse starts off with a not-so-perky extended complaint:

In the bleak midwinter, frosty wind made moan,
earth stood hard as iron, water like a stone;
snow had fallen, snow on snow, snow on snow…

It’s actually a religious hymn about the birth of Jesus Christ, and I don’t want to get too faith-based here, but the bottom line is, the start of the song sounds pretty dire, but it ends up in a happy, light-filled place. If, that is, you’re a Christian believer. Everybody else will probably be left as cold as the first verse sounds.

Regardless of religious conviction, however, the point of the song is that despite the cold and gloom of the winter months, a light comes into the world. And that transcends it all.

Personally, I like the bleak mid-winter, because it slows everyone down. All the running around and chasing after things during the spring, summer, and fall… well, it all gets a little tiresome, after a while. Our systems aren’t really built to keep going at top speed, all year long. Or even all day long. We need our sleep. It cleans out the gunk that builds up in our brains, and it helps our systems restore their balance.

The idea that you can get up at 4 a.m. and push-push-push for 18 hours, till you collapse, and then get up and do it all over again, is a dangerous concept. Some people can do it, sure. But they’re the exception. The vast majority of us really need our sleep to function. And that includes me. A lot of us could also use a nap, each afternoon. That includes me, also. But I only get that on weekends and my days off. All the other days, I have to keep up with others.

Of course, getting enough sleep is more easily said than done for me. Lately, I’ve been pretty anxious about some work issues, and I’ve been waking up at 5 a.m. instead of 6:30 or 7:00. So, I’ve been losing sleep. I’ve also been staying up later than I should, watching the tail-end of movies that I really like. It’s irresponsible, I know, and I need to stop it. And I will. But right now, my focus is on making sure I’m functional for today… not focusing on the evening at the end of my day.

But I’ve digressed. I love the bleak mid-winter for its cold, which slows us all down, as we have to deal with more layers of clothing. I love it for its long nights, which help me rest and relax. I love it for its crazy weather that keeps me on my toes. I don’t even mind the snow so much, because it gets me active and out and about. And I love how other people slowing down makes it easier to shop and go to the gym, because people are not feeling up to working out (especially after the initial rush over their New Year’s Resolutions has passed), or going to the store at early/late hours of the day.

The bleak mid-winter solves a lot of logistical issues for me, slows things down, gives me a break from the onslaught of constant go-go-go, and it gives me space to move and think instead of having to constantly negotiate the world around me.

And that’s fine. It’s just fine with me. So… onward.

Shaking things up just a little bit

railroad tracks on a gravel bed, one of them ends in the gravel
Time to step off the track and improvise. It’s good for my character.

I took a break from my memory training yesterday. I need to let my system just chill out and acclimate. I pushed myself for several days straight. Now it’s time to let the new connections in my brain (and all-over nervous system) chill out and have a rest. I’ll come back to my exercises in another couple of days.

I’m changing things up a bit. Heaven knows, I love my routines. I have had a lot of trouble in the past with getting things done – especially everyday things – so I have routinized many, many aspects of my life. It’s to the point where I don’t even need to think about doing a lot of things that used to really trip me up — getting myself out of bed, showered, dressed, fed, and out the door to work. It used to be such a trial and a pain — and every morning started with rage.

That’s a terrible way to live. So, I did something about it. I developed a routine I would stick with, each and every morning. It was rudimentary. It was far beneath my actual capabilities. But it relieved me of the need to think everything through, each and every day. So, it served a truly valuable purpose. I credit that routine with giving me a functional foundation again. And saving my self-respect in the process.

Now it’s time to shake things up a little bit. Change up the routines to get my brain to work a little harder.

As helpful as it is to do things the exact same way, in the exact same sequence every day, it’s also easy for my brain to just check out and not have to work at things as hard. When you’re struggling just to get out of bed and out the door to work each day, routine helps. But when you’ve got that down, and you know how to do it rote, sticking to the exact same routine can be a little deadening.

Because if you’re not continuously moving forward, then you’re actually moving backwards. Maybe not right away, but over time, if you don’t move… you’re in trouble.

So, I need to switch things around a little bit. I’ve been doing that at work, where I’m getting there earlier in the day. And I’ve been handling a wider variety of work, interacting with different people, taking on a wider array of responsibilities. I’ve been stepping into the kind of role I want to play in the future, and it’s been good. I figure I have the next year to figure out where I want to go and what I want to do — and that includes money. It turns out, I’m under-compensated. I checked on Glassdoor.com, and apparently, people are making a lot more money than I am, for doing the same work. I tend to lowball myself, because I tend to think that expensive people get cut first, but I may be wrong about that.

Anyway, I’ve been doing a wider array of things in my everyday life, too — more cleaning around the house, organizing, freeing up space and seeing how I can improve my living environment. I’ve been exercising religiously each morning, which itself is a bit of a change (I used to do it every now and then). I’m lifting weights differently. And I’m working on my swimming, doing more strokes that are harder for me and demand more of me. I’ve also been pushing myself to do extended laps, rather than just floating from one end of the pool to the other. It feels great to be in the water. And it also feels great to be tired, when I’m done with my workout.

I haven’t been doing as much walking on the weekends as I should. The summer was so hot and buggy. I just didn’t want to go out. I was also pretty tired. But I have to push myself to do better about that. I need to get out and walk today. Just up the road and back. Maybe on the hiking trails. It’s been raining for the past day or two, so things are wet and slippery, so I probably won’t go into the woods, where I could slip and fall and maybe not be found right away. I need to keep safe.

My spouse has a business engagement tonight, so I’ll be helping them get everything together for that. I have been more involved in their work, lately. It’s not quite to the point where I used to be involved, but I am doing more than I had been, over the past few years. They have lost a lot of supporters, over the past few years. I think their erratic emotions and highly demanding nature has put people off. Plus, my spouse expects people to do a lot for free — or be compensated just with words of thanks and gratitude. There’s more to compensation than that, but the don’t seem to understand that.

Well, that’s not my problem. I just need to take care of my own stuff.

But that also includes taking care of them. Because they’re getting older, and they’re not going to be 100% functional forever. We’ll need to make some changes — as my spouse becomes less able, and I continue to need to keep my career going, keep working, keep taking care of myself. I can’t see the point in sacrificing my success for them — no, our success, since everything I do really benefits us both. I am the breadwinner, after all.

So, I’ve been doing some research with regard to in-home care. It’s a thing now. I’ve had people tell me I should put them in a home, right after they had their severe health collapse, about 10 years ago. I was having trouble dealing with their constant neediness and the increased responsibilities of helping them get back on their feet, and a number of people told me I should look into some sort of managed care — that I shouldn’t stick around and have their bad decisions and habits affect me.

It’s just so bizarre to me, how people can be so cavalier about just ditching people who aren’t 100% functional and able-bodied. And I also can’t believe how easily others give up — that they don’t see how you can help someone work their way back to functionality (at least, without professional help). What a shame and a waste. Maybe if fewer people gave up, and more people realized just how much you can really do, we wouldn’t have as much human suffering. Maybe…

Anyway, after months and months of concern about how I’m going to help my spouse if/when they are unable to care for themself, I now know — I will find in-home care. It will be someone who they like, someone who’s really good and helpful. And I think it will be affordable. My spouse is on Medicare, so that might help pay for some of it. If not, I will find another way. If I can just stay at my current earning rate for the next 20 years (even if I never get another raise), I can afford to pay someone to come for 4-6 hours a day, four days a week. And if Medicare can help, even better. Unless something terrible happens to me (which is always a possibility), I can maintain my own state for the foreseeable future, just as-is. And that will let me adapt to my spouse’s changing status, as well.

This is yet another reason why I need to change things up with myself and my daily routine. I need to be flexible and capable under a variety of circumstances. I need to know how to keep my cool and soldier through. I need to be adaptable and not lose it, when things shift around me — as they invariably do. My current job is not secure, it’s not stable. It’s there for the time being, but I am pursuing different opportunities within my role at the company so that I can add them to my resume and beef up my desirability in the job market. Everything around me is an opportunity to improve and make myself stronger, more valuable, and able to command a higher dollar amount. I need those higher dollar amounts. It’s just ridiculous, that I should be paid less than I’m worth, so I need to start doing something about that.

And I am. Both by doing new and different things, and training myself to do those new and different things without losing my cool.

Onward.

#Brain training test results – 10-20-16

Here are the results of my testing yesterday. I got my test sheet and folded it in fours, then I studied the image below, committing it to memory. I traced the lines with my finger, and I also stood with my shoulders wide and my hands on my hips, to have a kind of physical memory of it, because it looks almost like a robot standing with its hands on its hips. I tried to take my time, but I was distracted by my busy day ahead.

Starting Image
10-20-16-start

I noticed when I was starting out, I was a bit impatient. I was tired (still am), and I was running behind schedule. So, I felt very antsy while I was studying the image

About four hours passed until I did my first attempt at recollecting.

First Attempt
10-20-16-try1

I did pretty well, getting the lines and all the pieces correct. However, I was a bit rushed, and the proportions were not correct. The top bar was too “chunky” (even though I remembered that the bar doesn’t go the whole way across). And I remembered the location of the circles in the middle. But I crowded them, and the bottom squares are too small. For some reason, I start out big, then I get smaller. I get nervous. I get rushed. And it shows.

At the end of the day, I took another shot:

Second Attempt
10-20-16-try2

I was clearly tired and rushed — I started drawing the bottom squares too quickly and forgot that I needed to leave room for the circles. Then I caught myself and course-corrected. The bottom squares are still too small, proportionately speaking. And the right one is smaller than the left. When I’m tired and nervous, I draw smaller. And I was rushed. I didn’t take my time — I think because I was nervous about possibly forgetting what I had in my mind.

So, what does this teach me?

Mainly, that I need to come up with a more effective technique for remembering things and keeping them in mind. I also need to relax and not rush. Because that gets me in trouble. It might not seem like that big of a deal here — it’s just a drawing — but that generalizes to other parts of my life that I really need to keep clear and steady. The skills I build while doing this can come in handy in other ways.

Additional test for today – and every day

circles-3-lines-2-1-r-up-1flagl-2flagsr-cross-r

Here’s a shape I’m going to study for a while… then write a post… and then see if I can replicate it from memory. I’ve found that this helps me really improve my ability to notice details and also remember things. I used to do it a lot. Then I got distracted by other things, and I stopped. I think I’ll start again. Like… now.

In the midst of just going about my life, I’ve gotten to a point where a lot of things I used to really struggle with, have now become rote. I’ve put a ton of energy into developing routines and also getting the discipline together to follow them.

And now I need to shake things up a little bit.

This past weekend was such a shaking-up time. I spent a day and a half going at top speed, helping my spouse with an out-of-town event. Originally, they were going to have friends help, then that fell through.

Rather than leaving them to their own defenses, I agreed to go along, drive the long hours, and help them with prep and wrapping up after the event. I’m actually glad I went, because it got me out of the house and it got me out of my rut. Now, I’m exhausted and I had to take the day off work to recover, but I’m still feeling pretty good, overall. And it was a good exercise for me — good training to work on my composure and ability to plan and follow-through.

I do need to work on a number of things:

  • My memory, which I’ve gotten a little complacent about. I’ve gotten used to forgetting things and then scrambling to make up the difference. I’d like to do better about remembering, to begin with.
  • My planning, which I’ve gotten lax about. I like to “go with the flow” at times, but that tends to get me in trouble, and I lose track of what I’m doing.
  • My follow-through, which doesn’t always happen… thus screwing up the plans I had made, in the first place.
  • Keeping things clean and tidy. It’s not that I’m dirty — I just let things get a little disorganized at times, and that makes everything more complicated than it needs to be. I’d like to simplify my life, which means I need to tidy up more often. So I don’t need to expend energy figuring out what’s where, and how I can find it.
  • Simplifying things by just saying “no”. I expend an awful lot of time deciding between competing priorities. I used to have a “never gonna happen” list, and I put a whole bunch of projects on it. But I still need to do more pruning, and not get pulled off-track by different ideas and intriguing pastimes. I need to just turn down offers from folks who want to collaborate, and stick with My Main Activity, till that’s done.

All in all, I’m feeling pretty positive about my life and the changes I’ve made over the years. Now it’s time to bump it up a notch. I need to test myself more than I have been. I feel as though the rest of my life has taken off without me, and I’m riding in a wagon with a team of galloping horses. I’d like to have a better handle on the reins, if that’s how it’s going to be.

I also need to spend a lot more time thinking about what I’ve done right, after I’ve done it, than get bogged down in the things I want to do better… eventually… whenever I get around to it. I tend to get so caught up in making lists, that I lose sight of actually just doing the items on the list. So, I need to focus on the completion of items, and thinking about them after the fact, rather than planning ahead and getting myself all psyched up … that tires me out. And then I have no energy to just get everything done.

Okay, now for my attempt at recreating that image…

memory-attempt-10-17-16

Mostly, it’s right. I’m feeling pretty positive about it. The places where I messed up, are with the direction of the “flag” on the left, as well as the sizes of the circles, relative to the lengths of the lines. The circles need to be a little bigger. I often seem to under-size the circles, for some reason.

All in all, though – it’s a good “go”.

Now you can help me to help others with TBI

group of hands holding onto each other in a circle
Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together