Unless we understand #TBI / #Concussion, we can’t really treat it

I’ve been more absent from this blog, this month, than I’d intended. Life… you know? It’s been very busy at work, and things are shifting with my role. I’ve had some additional training and workshops, and I’m still trying to figure out where I fit in.

Fortunately, I have help. There are a lot of folks at work who are eager to step in and pull people up to the level they need to be at. I’m not the only one who’s having some challenges navigating the new organizational structure, but fortunately, the expectation is that each and every one of us is going to have challenges and struggle somewhat.

So, that’s helpful, overall.

Getting support at work frees me up to get back to my mission: To write about long-term recovery from concussion / mild traumatic brain injury, and show that it is possible to restore your life after you’ve sustained a brain injury. There is a real dearth of information about this out in the world, and I’m (still) on a mission to do something about that.

I realize that all my … “gyrations” at work have distracted me from this mission. It’s been siphoning off all my energy and distracting me, which is the opposite of what I want and need. So, I’m settling down in my job, chilling out, and looking to my long-term future… 10… 15… 20… 30 years in the future.

And that frees me up to concentrate on the here-and-now with greater focus. It lets me get back to my mission.

The other day, while researching a post, I came across this article:

New Advice to Move More After a Concussion

When young athletes sustain concussions, they are typically told to rest until all symptoms disappear. That means no physical activity, reading, screen time or friends, and little light exposure, for multiple days and, in severe cases, weeks.

Restricting all forms of activity after a concussion is known as “cocooning.” But now new guidelines, written by an international panel of concussion experts and published this month in The British Journal of Sports Medicine, question that practice. Instead of cocooning, the new guidelines suggest that most young athletes should be encouraged to start being physically active within a day or two after the injury.

“The brain benefits from movement and exercise, including after a concussion,” says Dr. John Leddy, a professor of orthopedics at the Jacobs School of Medicine and Biomedical Sciences at the University at Buffalo, and one of the co-authors of the new guidelines.

And it makes sense to me. Because when you think about concussion / TBI in terms of what it is (an injury that disrupts connections and releases a bunch of “gunk” into the brain that shouldn’t be there), and you think about the brain in terms of what it does (processes information based on connections and makes new connections where none existed before), and you think about how the body works (moves all of that information through  – mentally and physically), then cocooning probably isn’t the thing to do for long periods of time.

TBI is a tricky thing. It’s different for everyone, of course, and something that works for one person might not work for another. But we’re all walking around in human bodies, and those human bodies function pretty much the same way.

So, if we use the principles of how the body and brain work, and we understand the nature of concussion, and we understand the dynamics of the whole scenario, new treatment approaches become clearer.

It surprises me a little bit that it took till May, 2017, to figure out how to better treat concussions. Then again, until the past 10-15 years or so, people didn’t really take “mild” traumatic brain injury that seriously. Everybody just laughed it off like it was no big deal.

Then we started to realize that onetime football players were ending up in a bad way — worse than the general public. And football players and their families started going public about their struggles. And people started talking — out loud — about stuff that used to be a source of terrible shame and embarrassment. The kinds of stuff that “you just didn’t talk about”, back in the day.

A lot has changed, thanks to research and increased awareness.

And we’re making progress in many areas.

But still, it surprises me, how much we don’t know… how much we still overlook… and how many people continue to struggle, months and years after a concussion or mTBI.

I have my own struggles, sure. A lot of the problems I had haven’t gone away completely. But after all these years of actively working on solutions, I’m doing a whole lot better at managing them, and that’s made all the difference. Maybe it’s true that brain injury can never be reversed, but then, life can never be reversed, and if we treat concussion issues as just another aspect of life that needs to be taken seriously and managed appropriately, it is very possible to have a “regular” life afterwards.

Sure, you’ll have to change some things. You’ll have to adjust. But life is full of those kinds of requirements. We don’t get a “pass” when we get injured, and the world jumps in to protect us. We just get a different set of challenges and difficulties and benefits to work with.

That being said, mental rigidity is probably one of the biggest hurdles to TBI recovery. The very black-and-white thinking that takes over when your brain gets injured can cause the injury to become even worse. Because you’re locked in a straitjacket of limited thinking. Getting your mindset out of the box and trying different things, living differently, getting on with your life, and being mindful about stuff… that can help hugely. I know it helped me more than I can say.

So, there are just a few more days left in Brain Injury Awareness Month. I’ve fallen far short of my stated plan to focus on brain injury recovery for the duration. I had such great plans… But of course… life. And my limits.

Turns out, what I’m taking away from Brain Injury Awareness Month is a reminder of how — yet again — I need to adjust my commitments and expectations and go a bit easier on myself. The thing to remember is that life goes on. And while I didn’t live up to my own expectations, the world keeps turning, the sun rises and sets, it snows and the snow melts, and the songbirds return to my bird feeder.

For today, that’s enough. It’s more than enough.

How may I dismiss you? Let me count the ways…

I read something really bothersome this morning – so bothersome, it’s tweaked my last raw nerve and put me in a mood.

It’s an article entitled “Top Ten Psychosomatic Symptoms” and apparently, it takes ~1 minute to read.

That should have been the first red flag. Nothing good can come of a diagnosis “aid” that takes 60 seconds to read.

Lo and behold, here are the top 10 symptoms created by your mind when the brain “attempt[s] to throw a person’s consciousness off guard by inducing physical changes in the body, in order to prevent the person from consciously experiencing difficult emotions, such as rage, sadness, and emotional distress.”

Oy. Here we go… all the ways that we’re not actually suffering from a real illness. The following may be all in your head:

1. Chronic Pain Syndrome – not real pain… you just don’t want to deal with your emotions
2. Fibromyalgia – odd… I thought it was settled, that it’s a real thing.
3. Carpal Tunnel Syndrome – because repetitive stress injuries… nah, not really a thing.
4. Gastrointestinal syndromes – maybe you should just try to relax
5. Migraine headaches – apparently, the top-trending medical issue on Twitter is a chimera
6. Frequent need for urination – because yer innards would never shift south and put pressure on your bladder, now would they?
7. Tinnitus and Vertigo – okay… clearly the person writing this has never dealt with this crap on a daily basis… for years. I invite them to walk a mile in my shoes.
8. Allergic phenomena – ’cause, like, our world is completely hypoallergenic. Not.
9. Skin rashes (Eczema, hives, acne, etc.) – okay, possibly…
10. Eating disorders – it’s been a long time since I read a more gross oversimplification

So, that’s the Hall of Shame for today, folks.

Be glad you don’t have the author for your therapist.

I sure am.

They say it’s the brain, but it’s also the body

It’s ALL connected

TBI can seriously mess you up in the head. That’s a given.

But it can also seriously mess with your physiology.

In fact, out of all the problems I’ve had over the years, the physical issues I’ve had have far outweighed the cognitive ones – if anything, they contributed to my cognitive and behavioral issues.

• Fatigue – bone-crushing, spirit-sapping exhaustion;
• Problems keeping my balance, which messed with my moods.
• Heart rate increase – or decrease, as well as blood pressure changes.
• Light and noise sensitivity.
• Headaches
• Body aches
• Sensitivity to touch, which really messed with my head, as well. Imagine never being able to have human contact… it’s not much fun.
• Constant adrenaline rush that wired me out, something fierce.

When your brain gets injured, it can affect your whole body. Because as we know, the brain is mission control for the rest of the works below the neck.

 

Endless headaches … continual symptoms… life goes on

What lies beneath – I live down there

For the past several weeks — on and off — I’ve been pulling together descriptions of what my symptoms are, Headaches, dizziness, nausea, feeling drugged and “doped up”, tremors and twitching in my face and hands… I usually don’t think about these things. I just get on with my life and don’t let them stop me.  Now that I’m putting them all down on paper to discuss with the new neuro, as well as review with my neuropsych.

You know, it’s funny… all this time, I’ve been really actively involved in my own recovery from TBI, and my neuropsych has had a very big positive influence on me, but not in ways that they probably intended. I think they’ve been thinking they’re helping me develop better skills and approaches — and they have.

But the real way they’ve helped, has been just being there reliably for me each week, to turn to and discuss matters of importance to me. Just being able to talk about my life to another person who can get it, is hugely helpful.

The only thing is, now I’m going down this path of digging into all these symptoms and complaints, and it feels very foreign to me. I spend so much of my time looking past the problems, disregarding the issues, coming up with ways to not have to deal with them explicitly – just work around them or do a variety of things to relieve them – that now I’m feeling the burn pretty intensely.

All the things I don’t talk about with others — because A) they can’t believe that it’s true, and B) they get all freaked out that I feel the way I do — is getting put down on paper. And it’s a trip.

God, I have a headache. And I’m sick to my stomach. Migraine? Who knows? And who cares?

There’s no sense in getting all depressed and upset about it. I can’t always do anything about the headaches — they don’t always respond to Advil, and the rest of the supposed “headache medicines” are like sugar pills to me. I’m much better off, just finding something I can focus my full attention on, and sticking with that.

Like my writing projects. Like the books I’m writing. Like the variety of things I have to occupy my attention. Fun things. A heck of a lot more fun than thinking about my headaches.

Anyway, life goes on, regardless. Or it doesn’t. Who knows how long any of us has, and why not make the most of it, while we can? I have my ways of dealing with headache that may even be more effective than medication. If you can’t feel the pain, you don’t have pain. So, if I can keep my focus on something that really captures my imagination and lifts my spirits, why not do that… instead of fretting about the headaches that never go away?

So long as it’s not something that’s life-threatening, why let it wreck my days? There is so much to do, so much to see, so much to experience… why let headaches stop me, when I know how to stop them?

Onward.

Stopping. Just stopping.

Sometimes you gotta hit the button

The holiday season is upon us. All the pressure to BUY-BUY-BUY and run around doing what everyone else is doing, is at an all-time high.

I feel unusually immune to it, this year. Nothing much has changed outside of me — the commercials on t.v. are all the same, the urgency is the same as in other years, and everyone is as busy as ever for this time of year. The world is the same as it ever was, things are just as messed up, we’re getting just as much news about how sh*tty the world is, along with a lot of pleas for financial help (that — just to be clear — is tax-deductible), and pressure to use the last weeks of the year to make up for the last 11-1/2 months of general negligence.

But while everyone else is running around like a chicken with their head cut off, I’m not. I feel pretty calm, actually, and I’m not running around to all the latest sales, spending hours online looking for presents, and going from party to party.

Even if I wanted to, I can’t run around and buy-buy-buy. I don’t have the money, which is kind of a relief. I’ve got to improvise. Come up with other ideas. And I will. I received a book in the mail that looks like something my mother would enjoy. And I’ve got some other ideas for things I can get for other family members for very low cost. I’m not worrying about it. I know how to handle things. And I am. Just handling them.

I also think it has a lot to do with the everyday pressure being off me, thanks to my short commute. I now have the time to get up in the morning and do what I please for an hour or so, before I start doing what the rest of the world wants me to do. I can move about, run errands at lunchtime, come and go as I please, and still get all my hours in at work. I can live my life without having to plan and think through everything I do in detail. And since I’m not a permanent, full-time employee, I don’t have to be existentially affected by changes at work and what they mean for my future.

I can just get on with my daily life and not worry about things like that. I’ll be updating my resume over the next few days, just to log the different thing I’ve accomplished at work, and make sure my resume is current and in good shape. And I’ll be taking time to just relax and enjoy myself.

Having a long commute, along with a demanding job, is a killer for me. I realize that now. I’ve had to work so hard for so long, to get where I am, but now I’m finally at a place where I’m comfortable with myself, professionally and personally. I realize that I’ve been in a good place for some time, now, but for the past number of years, I’ve been really on edge and nervous about where I am and how I’m doing.

Part of that nervousness was due to all the debt I was carrying and the pressures of just paying bills on time. I wiped out my debt over the past four years, so that pressure is off.

Another problem was that I was in a line of work that pays really well, but is inherently tension-producing, high-pressure, and precarious. Just the nature of the work — which is all about keeping current with the latest technology developments — was personally and professionally pressurizing. I got out of that side of the industry, turned my focus to people management, and now I’m in much better shape, overall.

And of course there’s the commute. I keep mentioning it, but it was such a huge factor in my life, I can’t even begin to say. Other people just take it for granted — and in fact so did I, for the last 25 years. But now that I don’t have to travel 45 minutes to an hour (or two) each way, every day, my life has literally turned around. I can rest. And even when I don’t get a full night’s sleep, it doesn’t wreck me like it used to. Long commutes used to seriously mess with my head.

No more. No more to all of the above.

The wild thing is, so much of what was making me miserable, I just took for granted. I figured that was how things were supposed to be. That’s what I knew, and that’s how I figured things were supposed to be. It wasn’t until I was pushed to my utmost limit, that I changed things up. Lots of suffering, lots of years of pain. Lots of change — needed change.

Ultimately, I’ve come out on the other end feeling strong and clear. It’s just such a huge difference. Even when my head is fuzzy and foggy, like today, my ears are ringing, my body is wracked with pain, I’m off balance, my thoughts are jumping all over the place like little jumping beans, and every little sound and light hurts me, I still feel strong and clear. And I know I can adapt and deal with the things that are getting in my way.

I’ve got a lot to do this weekend, but before I do, I’m stopping — just stopping — to take a breath, to get myself in a good frame of mind, and get clear on what needs to happen, before I charge forward into the fray. I’ve got my list — I wrote it out last night, while I was waiting for supper to warm up — and I’ll organize it for the best and most sensible direction to take, so I don’t waste time, and I can really focus on what I’m doing.

And I may even get a nap in there, somewhere.

This is good. This is very good.

Onward.

Back again… and landing on my feet

The Thanksgiving holiday was good. Traffic was insane, as just about anyone who drove during the past week can tell you. I traveled close to 2,000 miles, going from state to state to see extended family, and it was good. A lot of driving… and now I’m pretty sore from all the sitting… but it was good to break out of my routine for once.

Sometimes you just gotta trust (this guy landed on his feet, by the way)

I was really “off” my routine — I did almost nothing similar to what I normally do. I felt a little bit like the guy who jumped out of his space capsule a few years back, and fell 23 miles to earth. Like him, I had my reservations.

I ate different foods, I did different things, I had a different schedule, and I slept different hours. I didn’t sleep nearly enough, that’s for sure, but I managed. I got pretty sleepy when I was driving a few times, but I did things to wake myself up, and I took breaks when I needed to. Got out in the cold air, stretched, did jumping jacks, swung my arms around and sprinted a little bit. Whatever it takes to get there safely.

And like Felix Baumgartner, I came through okay.

I’ve been feeling pretty depressed, over the past month or so. I had a death in my family that has shifted the family dynamics. The person who died had a very complicated relationship with just about everyone — in some ways they were very loved, in other ways they were very feared. They were a challenge to deal with, although they had many, many fine qualities that we loved.

Their passing was actually a blessing for some folks in our family, and now they can rest and take a break and get on with their lives. For others, it was a deep loss, and now they don’t know what to do.

I didn’t expect this death to affect me as much as it has, but it’s changed my status in the family — it’s made me more “senior” in the generations, and my parents are now leaning on me, more than ever. Death brings that out in some people — we all become more aware of our mortality, and my folks are certainly more aware now.

So, there’s been more demands on me and my time and attention, and I believe that’s what was pulling me down. Just the demands. Being so tired. Having people relying on me, and feeling a little overwhelmed by everything. I know I can handle it. I just get very tired, and even when I’m doing well, I feel beaten down and low, when my energy is tapped out… which it was.

The other thing that’s been bothering me, is the sense that I haven’t accomplished the things I’ve intended to accomplish in life. I’m not talking about being a millionaire or being a powerful player on the world stage. I’m just talking about simple things like New Year’s resolutions and other projects I’ve started and could not finish. There are a lot of little things I have started and have not completed, and it was really pulling me down — especially since I’m that much more aware of death and how close it is.

It’s been pretty tough… but then again, it hasn’t. The tough part is not having the energy I usually do — feeling so blah and bland, like nothing really matters and there’s no point to anything. I haven’t had that steady “pump” of exuberance I usually do. And people have noticed it — tried to cheer me up, tried to get me all perky and what-not again.

I’ve noticed that people around me really do rely on me being positive and pro-active, and when I’m not that way, they get a little irked. Like I’m raining on their parade. Sorry, folks, I’m just not feeling it.

And I’ve noticed that I’m sort of the same way — I need that burst of positive energy, a certain perkiness, an “up” sense of myself, in order to get through the day.

But is that actually realistic? We can’t always been “up” and perky and feeling fit as a fiddle. Sometimes we’re tired and depressed and troubled by things that really should trouble us. It’s a little mentally ill to NOT be troubled by so much that’s going on in the world.

The thing is, I can’t let the down times derail my life. And what I’ve been working on, over the past couple of weeks, has been functioning very well without a sense of being “up” or pumped or pro-actively positive. Life goes on, even when I’m not emotionally euphoric. I can’t let my moods stop me from living my life. And in fact, when I get myself going, despite feeling down and depressed and defeated, before long, I feel that much better.

My moods follow my activity, as often as not. They shouldn’t set the stage and make or break me. I should be able to choose what I do and think and accomplish, each and every day, regardless of my emotional state.

That’s my goal, anyway.

And somehow, it’s strangely freeing. I’m off the emotional roller coaster, and I’m going about my business as I see fit. I’m not held back by feeling down and confused and depressed. I’m keeping on. Even if it doesn’t feel so fantastic, that actually doesn’t need to matter. If anything, it makes me feel better to be able to continue on in living my life, even if I’m feeling down.

As a TBI survivor, my moods come and go very abruptly. In one day, I can feel a thousand different ways, and each one would be true. My mood swings can be very extreme, as well. I can be euphoric one minute, and in the emotional basement the next. There’s not a lot of rhyme and reason to it — although being tired plays a big part in it. Things just come up, and I need to deal with them. I need to deal with my life in a constructive way, even if my emotions are running wild, and/or the rest of my system is a bit whacked.

That’s where I am, right now. I’m still really tired from the driving, I’m still overwhelmed from the family visits, my world is still evolving after the death, and my whole system is a bit “on the fritz”. I’m having trouble typing and putting words together, the ringing in my ears is pretty intense, and my main issues — fatigue, tinnitis, sensitivity to light and noise and touch, insomnia, general pain, headache, attention issues, emotional lability, panic/anxiety, anger spikes, raging behavior, confusion, difficulty understanding, trouble hearing, slowed processing speed, limited short-term working memory, balance, vertigo, difficulty reading and learning new things, nystagmus, and tremors — are being a real pain in my ass.

I don’t quite feel like I’m “here” yet. That will come, in the next days of getting rest, getting back to my routine, and eating the right foods. It will all come.

It just takes time.

It’s just good to be back home again.

Swimming through the downwelling — Got my STP going on

Good stuff for a tired-ass rainy day

When in doubt, Stone Temple Pilots are good company to keep. I’m listening to No. 4, and it’s as good as ever. I went through a period, over the past few years, when I didn’t listen to much rock music. It was a lot of electronic stuff — trace and whatnot. Always good for getting me flying down the road, to and from work.

Lately, though, I’ve been getting back to my good old rock ‘n’ roll. Lots of hard rock, as I drive to and from work. And it feels normal again. Like I’m picking up where I left off, a few years back.

It’s like I went on a detour for a few years. Thinking I was going to be or do something different. I blame that last job I had, where I was so out of place, and I just didn’t fit in at all, and I needed to take the edge off things.

The whole last ten years feels like a big-ass detour for me. It was that damn’ mild TBI in 2004 that screwed me up. I’m still pissed off about it, and how it derailed me. I’ve been swimming upstream, trying like crazy to get where I’m going, fighting a current I couldn’t see — a downwelling, as they call it in the ocean – watch a video about surviving downwelling here.

In a downwelling, when you’re scuba diving, an invisible current hits you and carries you down-down-down into the depths — potentially past your approved depth. It can take you down very quickly — fast enough to increase the nitrogen in your blood enough to make you feel — and act — drunk. And also pressurizing you very quickly. It’s crazy. If you get caught in a downwelling and can’t get out, you’re done for.

That’s kind of like what chronic mild TBI / concussion is like. Most people see their issues resolve in weeks or months, but some of us are stuck with them, and they can catch us unawares and plunge us into the depths — towards the abyss — before we even know what’s happening. It can be deadly. And if you choose wrong, you can get totally screwed up.

I didn’t realize until late 2007, that there was really a problem — three years past my injury. Everything went downhill, and I didn’t even realize it. Money was disappearing so fast, I might as well have set piles of it on fire. I jumped from job to job, not realizing how it would affect my future job prospects. I could not read, I could not learn, and I felt like I was literally disappearing from my life. I could not go outside very much, because of my light and noise sensitivities, and I had cataclysmic panic attacks that felt like seizures.

I was in the grip of a “life downwelling”, and I didn’t know which direction to swim to escape.

A number of things happened to help me along the way

1. I realized that something was wrong
2. I realized I needed to do something about it
3. I hunted high and low to find information and people who could help me understand what was happening
4. Almost by chance, I connected with an excellent neuropsychologist who was able to help me soldier through
5. I just kept going, no matter what

I’m now at a place in my life where I’m back on track. My mountains of debt are gone, my job situation is stable, and I’m able to read again.

And yet, I feel like a stranger to myself.

Technically, I supposed no one really knows themself inside and out. We all delude ourselves to some extent. But with TBI, it feels to me like there are a ton of gaps that I just can’t fill. I don’t even know where to start. It’s like my life is a big hunk of swiss cheese with a lot of holes in it, and I don’t even know the holes are there, till it’s too late. I’m in trouble again.

Anyway, STP helps me get my mind off that. They help me just keep going, even when I’m not feeling up to it. Keeps me swimming — out of the downward spiraling current and up towards safety again. A good dose of heavy guitar and rock lyrics gets me back on track in useful ways.

Gradually, I’m coming back to where I want to be. It takes time. And I need company, along the way. STP is good company. Thanks, guys.

Music is the best company I can think to keep. It’s there when I need it, and I can always turn it off, when I’m done for the day.

Speaking of the day, I’ve got to get on with it. I’ve got a handful of things I need to do today, including resting up. It’s been a long, long week, and I need a break, for sure. I’ll get that break later today after my chores are done, and I can comfortably settle into my bed, pull the covers over my head, and just check out.

Looking forward to it.

But in the meantime, there’s always hard and heavy rock music.

I didn’t fail. I just got tired.

So much depends on your outlook

I had a revelation this morning, as I was waking up. In the space of a few seconds, it turned an imagined failure into a chance for long-term success.

It was the realization that when I started to lose my temper with my spouse last night, it wasn’t a sign that I was failing at my attempts to be more level-headed and calm, no matter what the situation. It was a clear sign that I was tired, and that my brain needed sleep.

I have been working on being more level-headed — no matter what the situation. This is a lifelong pursuit, actually. I saw the need for it, when I was a teenager and a young adult… as an adult in the working world… and it continues to be important to me. It’s not that I want everything to be perfect for me all the time and give me no trouble. What I want, is to be able to handle my circumstances, be okay with them (within reason), and make the best of any situation’s opportunities, no matter now “bad” it may look at the time.

I have had some good success with this approach over the years. After all, I have seen the ill-effects NOT having a level head in challenging circumstances, and the results are rarely pretty. I have had plenty of opportunity to witness this in the people around me — in my family, especially, when my parents could not hold it together with one of my “problematic” (that is — drug-addicted, alcoholic, sleeping-with-anything-that-moved, drug-dealing) siblings. It was bad enough that my sibling had all those problems (which were signs of something far deeper going on with them). But my parents could not maintain their composure or clarity of thought when it came to my sibling, so that made a bad situation even worse.

I’m not judging my parents — they were not equipped to handle it, and we lived in an area where any problem with kids was a reflection on the parents, so they went from being respected members of society to being “those people” who everybody handled very gingerly.

Anyway, I’ve seen many examples in my own life, where keeping a level head and a calm demeanor helped me through tough times. I actually credit my many TBIs (I’ve had 9+) with helping me with this, because they slowed down my processing speed. When your processing speed is slowed down, it makes it pretty difficult to get on the same wavelength with everybody else… and in case you haven’t noticed, being on the same wavelength as everybody else leaves a lot to be desired.

Everybody gets so worked up over things. But when you’re not thinking as quickly as everyone else, you can’t jump to the same conclusions and get to those snap judgments that can send you careening into HOLY SH*T WHAT THE F*CK land. Everybody else is freaking out — oftentimes about something that isn’t worth freaking out about — and you’re still trying to figure out what just happened…

So, if you think about it, slower processing speed isn’t always a bad thing. And equanimity… peace of mind… level-headedness in the face of a crisis is a definite advantage. Especially when everybody else’s “normal-fast” thinking is vectoring off in a really unproductive direction.

Anyway, that’s one half of the story. The other half of it is less cheery — that’s the aspect of my thinking that is WAY more reactive than others’. It’s the instant-freak-out part of my experience that has made me nuts for years. At an instant’s notice, I’ll suddenly FREAK OUT over something. It can be a dropped spoon, or a missed channel that I’m trying to change with the clicker, or something my spouse says or does that rubs me the wrong way.

When things go haywire in my head, they go really haywire. There’s no middle ground. Everything goes nuts. I know I’m being unreasonable, I know I’m being crazy, I know there is no logical reason for me to be freaking out, but it’s happening anyway. And it’s never good for anyone. I’ve lost more relationships than I can say, because of this. That includes a really good job I lost in 2005 after my TBI in 2004.

People are afraid of me, when I start to get agitated and aggressive — which may have to do with me, or may have to do with them. I don’t want to give anyone any reason to be afraid of me. It’s counter-productive. And it hurts everyone involved.

So, there’s all the more reason to keep tabs on myself and foster a calm demeanor, a cool head, and a self-possessed state of mind. And with that goal in mind, I have pursued a number of different practices and philosophies that might help me with that. I have worked on practices that emphasize acceptance, calmness, not reacting to things around me, and philosophies that teach about how transitory life is, and how important it is for us to understand what we can and cannot change, and not make ourselves nuts trying to alter things that can’t be changed.

Like the serenity prayer:

God, grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference.

This has been a very powerful concept in my life, and I have it displayed in my kitchen where I will see it each morning when I get up and make my coffee.

Along the way, I have had many surges in interest in deepening this practice — in really getting to a place where I can make peace with the things I cannot change, and make the most of the opportunities that are hidden there. I’m a big believer that some of our worst hurdles and challenges offer us the greatest rewards — and when we resist those challenges, we miss out on the chance to become bigger and better than ever before.

Some things I can accept and work with — political changes, cultural changes, relocations from one area to the next, and small-scale changes at work. Other changes I have a harder time with — job changes, especially. The ones that make me the craziest are the ones I feel like I cannot understand or control — or that go off in a direction that is completely different from the direction I see myself headed.

Other things I cannot seem to accept, are the foolishness of others — the stinkin’ thinkin’ that my spouse indulges in, their constant anxiety, their devotion to drama, their bad habit of telling everyone exactly what they want to hear instead of the constructive truth. I have trouble with the attitudes of people at work, who can be cliquish and juvenile. I have trouble with the judgment of Management at work, when their decisions seem counter-productive and get in the way of us doing our work. My siblings also depress the sh*t out of me, with their choices and their prejudices and their holier-than-thou attitude. My parents are a little easier to deal with, because they are many hours away, and I don’t see them that often.

It’s the people who are closest to me, who I have the greatest investment in, that get me with their unhealthy habits of thought and action, their outlooks, their attitudes, and their behavior that seems to serve no useful purpose, other than to make them feel good about themselves — at the expense of everyone else.

The thing is, their behaviors and beliefs and actions have almost nothing to do with me. Even my spouse’s bad habits have more to do with them, than with me — no matter how much they may blame me for their anxiety. I am making myself unhappy over things that are far beyond my control, and it’s not helping me at all.

So, there is all the more incentive for me to calm myself down, not react to what they are doing, and step back and look at them and everything from a distance.

I have found some philosophies and outlooks that can help me do that, and I have pursued them eagerly, on and off, over the years. The thing is, I get to a certain point, then everything falls apart. My equanimity dissolves. I melt down, inside my head and heart. My temper explodes. And I end up feeling worse off than when I started. I feel like I’m back to Square 1, without having made any progress at all.

But in fact, I have made progress. My meltdowns and explosions do not mean that I have utterly failed at learning a new way of thinking and being and relating to others. They do mean that my brain has been working hard, so it is tired. And I need to rest it.

Because changing yourself and your brain and your patterns of thought and action and attitude is hard work. It doesn’t happen overnight. And the fact that I am getting frayed and losing it, actually means that I am making progress — I just need to take a break, rest up, learn what I can about what sets me off, and resume learning again, once I am rested.

This realization is just what I’ve been needing — for a long, long time. Getting frayed at 10 p.m. over someone being a pain in my ass is NOT a sign that I’m failing. It’s a sign that I’ve been working hard all day at changing my mind and my brain, and that it’s time to rest. It’s not a condemnation — it’s a diagnostic tool. And far from being an indication of my inferiority, it’s evidence that I’m actually making progress.

The simple fact is, I’m a brain-injured human being. If you think about it, there are a lot of people who are injured in one way or another, and we are all working our way through the maze called life, trying to find a better way to live. And because of my injuries, because of my history of experiences, my individual makeup, and all the different things that have made me what I am today, I have certain limitations I need to be mindful of and accommodate, so I can work around them and not let them get to me.

Fatigue and the irritability that comes from being tired are a couple of those limitations. So is:

• a sharp tongue — over little things
• a hot temper — at an instant’s notice
• slower processing speed than one would expect
• the almost constant pain that I’ve become resigned to living with, the rest of my born days
• perpetual, never-ending tinnitus
• light-sensitivity
• noise-sensitivity

And so on.

It’s not that my life is awful. It’s pretty sweet, to tell the truth. I just need to be aware of these issues, not forget them — or when I do forget them, find a way to remember that the things I’m doing and saying are about my brain injury, NOT about my character.

So, there is hope. There always is, so long as I don’t give up.

And speaking of not giving up, I’m going to get ready for work and get into my day, knowing that I didn’t fail last night, when I got cross with my spouse. I was just tired, and no animals were hurt in the filming of that movie.

Onward.

The shell-ter we carry with us

Our home is what we make it

One of my readers made a great comment over at a recent post:

I have come to recognise and realise, we people with TBIs need to embolden a special type of shell-fish (to otherwise be read as selfish.) The “shell” to house us from what would otherwise be attacks, accusations and allegations over being or feeling “bad” or that we may seem self-centered, any of our actions taken had very real and perceptive reasons and consequences.
Only when we debride a wound, or reach deep within residual scar tissue, are we allowed to uncover (very necessary to the healing process) healthy tissues.
A thorough study of the self amid the healing process, is a study in contradictions. The study of the self in TBI is, filled with cyclical change, growth, angst, beginnings. It is as though we are of two or more persons; walking through the situations in real time, taking the time to study, perhaps rehearse and may even attempt to resolve the consequences of earlier decisions.
Are these not the habits of people without TBI? Of course.
Therefore, the “shell” of being shellfish in TBI, may need to be a little more hearty and courageous, mayhaps even a little outrageous, to understand the absolute truth of these matters.

It’s very true. Like a hermit crab, we need to find shell-ter where we can, develop our defenses like a protective shell, and learn to carry it with us, as we go through life. No one else can know 100% what we are going through, so we need to develop our own defenses, our own sense of self, our own techniques and tricks to get us by.

I was just thinking about this yesterday — how I can basically make it through most situations in life without alerting everyone to the fact that I am struggling so terribly at times. My memory fails me.

The noise is too loud, the lights are too bright, and I have deafening ringing in my ears.

I am in pain.

I am off balance, struggling with vertigo, feeling like I’m going to lose my mind with having to keep upright.

Or I am boiling on the inside and fighting back my intense desire to either run screaming from the building or punch someone in the face.

Or I am dying inside, feeling like I am just not keeping up, and I have no idea what is going on in the conversation I’m participating in, even though it really matters a lot that I keep up.

I can get through those situations intact, because I have a shell of collected tactics I have built up over the years. Some of them I’ve been using a long time, while others are fairly recent.

But whatever their source or “vintage”, they work.

They keep me safe. They are not me, and they are not something I want to have, but I lost my “real shell” a long, long time ago, so I make do as best I can. And it works.

That’s the main thing. My internal state changes frequently, often without making any sense to me. It’s usually connected to my physical well-being — when I get tired, everything gets harder, and I am tired a lot of the time. So, I have to have a way to offset that effect, so my life can continue.

It’s not easy. It’s pretty painful at times. And it takes a lot out of me. But it works.

And that’s what really matters.

It’s bad enough that I have these issues. But having them screw up my life at the same time? That’s no good — not if I can at all avoid or prevent it.

And so I do.

Onward.

 

The TBI/Concussion Energy Crisis – Part 2 of 2

This is Part 2 of a long post that I’ve split into two parts. The first part is here:

Running on empty?

Long-term outcomes after mild traumatic brain injury — and persistent post-concussion syndrome that doesn’t resolve in the usual couple of weeks — have baffled researchers and practitioners for a long time, but to me it makes perfect sense. There is a cumulative effect of stress and strain that comes over time. There’s plenty of research about the long-term effects of chronic stress. But there doesn’t seem to be a lot of research about the levels of stress among mild TBI and concussion survivors.

Everybody seems to think things just resolve. And they don’t seem to think it matters much, that we are no longer the people we once were. They don’t seem to realize what a profound and serious threat this is to our sense of who we are, and our understanding of our place in the world. At most, it’s treated like an inconvenience that we’ll just see our way through with time.

But it’s bigger than that. Losing your long-held sense of self when you’re a full-grown adult, with a full docket of responsibilities and a whole lot invested (both by yourself and by others) in your identity being stable, is a dire threat to your very existence. It is as threatening to your survival, as surviving an explosion, a flood, an earthquake, or some other catastrophe that nearly does you in.

It’s traumatic. But because it’s not over the top and in your face and dramatic — and it doesn’t register on most imaging or diagnostic equipment — people think it just doesn’t matter.

Or that it doesn’t exist.

Frankly, the professional community should know better — especially those who work with trauma. They, of all people, should know what trauma does to a person — in the short and long term. I suppose they do know. They just underestimate the level of stress that comes from losing your sense of self and having to rebuild — sometimes from scratch. I’m not even sure they realize it exists.

But they do exist. Dealing with the daily barrage of surprises about things not working the way they used to… it gets tiring. Trying to keep up, takes it out of you. I know in the course of my day, I have to readjust and re-approach many, many situations, because my first impulse is flat-out wrong. I have to be always on my toes, always paying close attention, always focused on what’s important. Always reminding myself what’s important. I have to perpetually check in with myself to see how I’m doing, where I’m at, what’s next, what I just did, how it fits with everything else I’m doing… Lord almighty, it takes a lot of energy.

What’s more, those stresses and strains are made even worse by being surrounded by people who don’t get how hard I’m working. I swear, they just have no clue — my spouse and my neuropsych included. They seem to think that this all comes easily to me, because I do a damned good job of smoothing things over and covering up the turmoil that’s going on inside of me. I have trained myself — through a combination of techniques — to at least appear to be calm in the midst of crisis. Even when things are falling apart around me and inside me, even when I am at my wits’ end and am about to lose it, I can (usually) maintain a calm demeanor and chill out everyone around me.

Heaven knows, I’ve had plenty of practice over the years. If I hadn’t learned to do this, I would probably be in prison right now.

No, not probably. I would be in prison. I like being free and un-incarcerated, so I’ve learned to hold my sh*t.

Which is where sleep and proper nutrition and exercise come in. Because after years of thinking that sharing my experience with the ones closest to me would enlist their help, I’ve realized that doing that will never ever achieve that goal. People just don’t get it. Even my neuropsych doesn’t get it. Everyone has this image of me as I present to them, which is totally different from what’s going on inside of me.They seem to make assumptions about how I am and what I am and what life is like for me, that have nothing to do with how things really are.

Inside, I have a ton of issues I have to manage each and every day. Today, it’s

• confusion & disorganization
• anxiety
• irritability
• neck, back and joint pain
• noise sensitivity
• dizziness
• ringing in my ears that’s not only the high-pitched whine that never goes away, but is now accompanied by intermittent sounds like a tractor-trailer back-up alert beep. Nice, right?

And that’s just for starters. Who knows what will happen later today.

But I’ll stow the violins — the point is, I really can’t rely on others to figure things out for me — even the trained professionals. I can’t rely on them to understand or appreciate what my life is like from day to day. I need to rely on myself, to understand my own “state” and to manage that state on my own through nutrition, adequate exercise, rest… and to advocate for myself to get what I need.

I have to keep those needs simple — rest, nutrition, exercise — and not complicate matters. Getting more elaborate than that just works against me. It’s hard to explain to people, it gets all jumbled up in my head, and the other people try to solve problems they don’t understand, in the first place.

On the one hand, it can get pretty lonely. On the other hand, it’s incredibly freeing. Because I know best what’s going on with me, and I know I can figure out how to get that in place.

The bottom line is — after this very long post — TBI and concussion take a ton of energy to address. It’s not a simple matter of resting up till the extra potassium and glucose clear out of your brain. There are pathways to be rewired, and they don’t rewire themselves. Depending on the nature of your injury — and a diffuse axonal injury that frays a ton of different connections, even just slightly, can introduce a wide, wide array of frustrations and hurdles — you can end up spending a ton of time just retraining yourself to do the most basic things. Like getting ready for work and making yourself breakfast without missing any important steps (e.g., taking a shower or turning off the stove).

And when you’re trying to rewire your brain and retrain yourself to get back on track, at the same time you’re trying to maintain your life as it once was… well, that’s a recipe for a whole lot of hurt, if you don’t give yourself the energy stockpiles you need to move forward, and if you don’t take steps to regularly clear out the gunk that accumulates in your physical system, as a result of the stresses and strains of the rewiring process.

That being said, I wish that someone would do a study on the stress levels of concussion and other mild traumatic brain injury survivors. We need to collect this data, in order for professionals to better understand us and our situations, and to better know how to treat us.

For the time being, however, I’m not holding my breath. I know what works for me, with regard to my recovery — having someone non-judgmental to talk to about my daily experience, keeping records of my daily life so I can self-manage it, regular exercise, pacing myself, good nutrition, intermittent fasting, keeping away from junk food, adding more high-quality fats and oils to my diet, and getting ample sleep with naps thrown in for good measure.

Those are really the cornerstones of my recovery. When I do all of them on a regular basis, I get better. If I overlook any one of them, I slide back in my progress. It’s an ongoing process, for sure.