The slow return to normal – and beyond

Kind of what it feels like

So, the upheaval over the accident a week ago has begun to settle down. I truly cannot imagine a worse time for life to be disrupted. It’s been a roller coaster of tears and anger and frustration and confusion, with some pretty intense extremes.

I really don’t have time for this sh*t.

I’m not being selfish and insensitive. I really feel for my spouse and all they are going through. It was a really traumatic experience, and I totally understand the reasons for the tears and the anger and all the emotional upheaval. I truly do understand. And I’m there for them to support them as they heal. And I have to deal with my own emotional stuff, too.

The thing is, life goes on, and I have a lot going on with me, just to keep the ship sailing in the right direction. I have to keep functional at work. And I have to finish my own personal projects which are a way for me to A) earn some extra money now, and B) set me up for future income in the years to come, when I cannot do this 9-5 work thing anymore.

I’m feeling less and less capable of dealing with the workaday world, each day, and I know I need a change. I’m not happy with how my brain functions at work – I’m forgetful and distracted and I am not functioning at the level I want to be at. I feel so marginal. I think it’s a combination of brain injury stuff and motivation and the general environment. When you’re dealing with TBI, you have to put in a lot of extra effort and find the “special sauce” that keeps you actively engaged in your life. Then things can go relatively smoothly (on a good day).

But if you take away the motivation and the joy, the sense of purpose and connection, everything gets harder. A lot harder. People at work are very nice, and I’ve had worse jobs, but they’re cliquish and petty and we have very, very little in common.

It becomes more obvious to me, every day, that I cannot continue to make a living, doing what I do the way I do it now. I am wearing so thin, it’s a challenge just to keep my head in the game and show up 100% each day. I really friggin’ hate the 9-5 scene, with the cubicles, the pettiness, being stuck inside all the time, and being in an artificial environment. It also makes me nuts that the people running the show don’t seem to be interested in actually running the business for profit, so when they come up short, people get cut, and it leaves me feeling quite vulnerable and exposed.

That will never do. Someone else who can’t run their business is going to dictate how my life develops? Oh, I don’t think so. It’s really wearing thin with me, and I need to get out. I’ve started counting down to when I can leave — not sure when that is, but I’ve got this countdown going in my head.

So I’ve been putting a lot of my time and energy into developing concepts and projects that can get me out of that environment. I continue to get up each day and go through the process of living my life and building the pieces I need in place for myself in the future. I’m very clear about my ongoing direction — there’s a lot of writing and publishing and “information marketing” in the cards for me — and I’m very clear about how to get there. Plus, there are a lot of resources online to help me get where I am going. So, I’m fairly confident these ideas will take flight.

It just takes a lot of work and a lot of focus. Every extra hour I have, when I’m not eating or sleeping or trying to relax for just a few hours, gets funnelled into my Great Escape. And having this car accident intrude on my focus and having to process all the drama around this event has really been sucking the life out of my activities.

I’m not feeling like I have the wherewithal to go through this whole post-traumatic process with my spouse, and deal with it along with the rest of my life. It was traumatic for me, too, because whatever happens to my spouse, happens to me, and it was pretty intense, being at the hospital and not knowing what the hell was going on. And the car being wrecked… that’s not so great, either. Working through it all… it takes time, and time is something I just don’t have much of.

The thing is, in the back of my mind, I am absolutely certain that things are going to turn around for us. My personal projects are solid and valuable, and I know a number of businesses which have a real need for them. It’s only a matter of time, till I can break free of where I’m at.

It’s the getting there that takes so much time and energy. So, I’m just keeping steady… slowly returning to normal… sitting through the tears and anger and fear and anxiety… looking for every opportunity to change and improve, picking and choosing how I spend my time.

I’m also continuing to grow and expand and develop. Getting new ideas. Following through on them. Testing and seeing what works and what doesn’t, and just staying steady. There’s none of that old haphazard approach, where I would just throw something out there and hope for the best. I’ve got plans in place, and it makes all the difference in the world.

And so it goes. I have to keep current with my sleep, as well as my nutrition. I need to keep on with the everyday, as well as reach beyond to what’s yet to come. I’m feeling really positive about the direction I’m taking.

I just need to get through the fallout from this accident in one piece.

Onward.

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The worst thing about trauma

It hits at all levels

Just a tip — if you have a weak stomach, don’t Google “trauma” and look at the images. I just did, and I regret it.

Anyway… I’m writing this ahead of time and scheduling it to publish while I’m way. By the time you’re reading this, I’ll probably be on the road, off to collect the rest of the crap from the smashed vehicle my spouse was in. Again, I am so grateful things didn’t turn out worse.

Still, it’s a sh*tty way to spend my day off. Especially when I was in such need of downtime, having been really sick all last week.

So much for that.

To be quite honest, the hardest part about the whole thing was that everyone had to emotionally process everything. They had to call their friends, talk to everybody they met about it, recount the experience, get sympathy from people, have an “emotional release”… and do it all over again. And all the while, the friend’s smartphone kept going off and dinging with every text that would come in, setting off the most irritating set of ringtones I’ve ever heard, and not giving me a moment’s rest. Driving a long distance on very little sleep, having that smartphone go off every 15 seconds was nerve-wracking, to say the least. It was startling and jarring, and no sooner would they settle down from one emotional conversation with someone, than someone else would call them, and they’d launch into their hysterics all over again.

Oh. My. God.

I am so tired. I went to bed when I got home last night — about 6 p.m. And I slept till 4:30 this morning. It felt great to get 10-1/2 hours of sleep, and I have a massage later today, which will be fantastic. I also need to drive back out to the tow yard, halfway across the state, to pick up the rest of the equipment in the trashed vehicle, so it’s not a total loss. I just need to work today, to move and go about my business, work around the house, call the insurance company, and take action, without constant processing going on.

Please. I need a break.

Now, I know that I do a lot of talking, myself. And I have to consider my own approach to talking things through and processing everything. I like to think that I process and move on. That I speak my peace and then make necessary changes to ensure those things don’t happen out of my negligence or stupidity or lack of preparation. It’s one thing to go through difficult times. It’s another, to never shut up about it, and “get stuck” in the whole experience, because you want others to feel sorry for you.

If I ever sound like the friend who kept replaying that experience… somebody tell me to shut the hell up. I am truly sorry, if I ever put any of you through that.

Truly, I am.

The crux of it for me, really, is that when we experience trauma, our bodies are put into shock, and on a physical level, we get primed for startle and hyper-alertness. Our bodies are trying to protect us, and they think they have to keep being alert. But they don’t. Our minds pick up on our body’s hyper-alert state, and they get tricked into thinking that they need to be hyper-alert, too… rehashing the experience, so they can “learn” what the situation looked like, to avoid it in the future.

The thing is, for some situations — like a punk in a fast car being an asshole — you cannot predict and anticipate it, so all the “learning” you are doing is just sucking up your energy that could be spent on healing from the whole hellish experience. And rather than making you safer, you’re re-traumatizing yourself and making everything that much worse.

That’s my argument with people who insist on telling everyone about their awful childhood experiences with abusive parents/uncles/siblings/caretakers, etc. It doesn’t change anything, it doesn’t solve anything, it just keeps spreading the trauma around to everyone who had nothing to do with it, and who don’t deserve to be sucked into what was a truly horrific experience.

Trauma needs to be handled in other ways, not talking. It’s a physiological experience, and it needs to be dealt with on the physical level. The body takes over the mind — hijacks your executive functioning — and you have to get it all to settle down, before things in your mind can calm down.

That means resting and eating right and moving. You cannot heal without some sort of movement. You just can’t. You’ve got to get out of your head and get your ass up out of the chair/bed, and really move it. Because if you don’t, your body is going have a backlog of stress chemicals that convince it that it needs to be on HIGH ALERT, and you will keep reliving your shitty experience as though it were still true.

Okay, enough of my rant. It’s time for me to do something constructive with this energy. Time to move.

Time to go juggle. And get on with my day.

Onward.

 

So much for my weekend off

Where’s my damn’ car?

Well, it was a nice thought. I had three days to work on my projects and pretty much unwind, catch up with myself, and sleep… get healthy, etc.

That was the plan, anyway.

Then my spouse got into a really bad car accident on Saturday afternoon, and I had to drive out to a country hospital to meet them and the business associate they were traveling with. The hospital was really old-fashioned – like something out of the 1950s, and the ER physician was about as dynamic as a brick. I’m not sure that he did a thorough job checking out my spouse, who hit their head on the door frame. They said they just had a bump on their head, and they didn’t have a headache. My spouse kept trying to charm the doctor, while he was doing the examination, which can’t have made his job any easier. I didn’t know what to do, other than keep them from lying to the doctor outright. They’re terrified of doctors, and they were completely freaked out by the whole experience. So, there was only so much I could actually do.

My spouse and their friend had their doubts about driving — road conditions were not good, and visibility was poor. But they had committed to the trip, and their destination had good weather, so they thought it would be fine, once they got out there. None of us factored in the weather between our home and their destination. Ultimately, thought,the real problem was no so much the road conditions — rather, the poor judgment and behavior of the person who caused the wreck.

They were not hurt badly, but they had to go to the hospital to be evaluated, and then because of their states of mind and body, they couldn’t get back in a car and drive home. So, we spent Sunday hanging out at a chilly little country motel, wrapped in coats and blankets, trying to stay warm, eating Sunday brunch, finding the tow yard where the car was, collecting their personal items, trying to fit them all into my little hatchback (with three people in it), and getting everyone home safely … from quite a ways away.

They are both truly lucky to be as healthy as they are. They’re lucky to be alive. They both could have easily been killed, if they’d been in a smaller car, or there had been more traffic on the road they were on. For that I am truly grateful. There are a lot of things to be thankful for in this. The car may be totaled, but I kind of hated that car, anyway. It was too big for my spouse — or just about anyone — to handle safely. Especially in low visibility. Or where the space is tight. They felt safe in it, but that’s a grand illusion.

I have no idea where or how we’re going to replace the vehicle, but I’ll figure something out. I just got some money from an estate settlement from a relative who died within the past year, and I was going to use that money to fix the house. But it looks like it may go to either fixing this car or buying a new (to me) one.

My insurance company already hates me, because I’ve filed claims for damage to the house that was actually my fault, rather than an accident. I didn’t realize you can’t file a claim if it’s your fault, or if you didn’t call a repair person to look at it before. I thought you could file your claim and then have the repair person come. I guess it’s the other way around. And now I look like an insurance fraudster. Nice.

But this accident was not my spouse’s fault, and it’s a legitimate claim. Basically, a young kid driving a fast car got “adventurous” on a very narrow road and caused 13 cars to pile up. 7 of them had to be towed (including ours), and a whole bunch of people went to the hospital, including my spouse and their friend/business associate.

And I spent Saturday evening and all day Sunday dealing with the fallout.

I know I’m rambling here. I’m tired and still out of sorts. It’s going to be a few weeks, till this settles down, I’m sure. I just have to keep on — steady on — and take care of myself. Keep balanced. Just deal with it.

Well, anyway, it’s time to take a break. This whole thing has got me thinking a lot about trauma and how to deal with it. I’ve already written a whole long rant about it — I’m going to split it into another section and publish it later. For now, I’m going to focus on being grateful that things didn’t turn out worse.

Because they really could have.

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.

The TBI/Concussion Energy Crisis – Part 1 of 2

This is Part 1 of a long post that (out of consideration for your time) I’ve split into two parts. The second part is here:

Running on empty?

I’m having my butter-fat coffee this morning, thinking about how I’m going to plan my day. I have some back taxes work I have to do — I need to refile from prior years, because I messed up a couple of times and I need to make it right. Fortunately, I erred to my own disadvantage before, so fixing those errors and refiling will bring in a little extra money, which I can really use.

I had a pretty restful sleep last night. However, I woke up at 5 again, which I did not want to do, and I was pretty stiff and sore from all my activity yesterday. That’s the thing about getting a sudden burst of energy — I want to use it, I want to experience it, I want to feel what it’s like to really move again. So, my body ends up moving more than it has in a long time, and then I get sore.

Fortunately, it’s a “good sore” which is a sign that I’m getting stronger and more active. This is one of those rare cases where “pain is weakness leaving the body”.

I considered getting up, because I would love to have an extra useful hour or two in my day. But I was still pretty tired, so I stretched a little bit, then relaxed with my guided imagery recording, and went back to sleep with earplugs and eye mask. I have light-blocking curtains in my bedroom, but sometimes the light gets in, so I use an eye mask. In the winter when it is cold, I wear a winter cap in bed to keep warm, and I pull it down over my eyes to block the light. But now that it’s warmer, I can’t use the cap. So, the eye mask it is.

Something about the eye mask helps me sleep — it’s a Pavlovian response, I think. I usually use it when I am trying to fall asleep during the day, and it works.  So, I have an ingrained response to relax when I put on my eye mask. And it worked. I got another hour of sleep, and I woke up feeling much more human.

Yesterday I had written about how it’s energy shortages that make me so tired, rather than lack of sleep. Well, let me just say that it’s really both that get me. If I’m over-tired, no matter how many high-quality fats I put in my body, I’m going to run out of steam. And if I don’t have enough high-quality fats in my system to convert into energy, all the sleep in the world isn’t going to fix me up.

One of the things that I think really bites mild TBI and concussion survivors in the ass, is also probably one of the most overlooked — The Energy Crisis. I think that people (especially health care providers) really don’t get how hard we have to work to reorient ourselves and retrain our brains after a mild TBI or concussion. There are so many subtle ways that our regular routines and regular thinking patterns are disrupted, and we can totally miss those subtle disruptions until they balloon in to bigger problems.

One thing after another goes wrong. Sometimes we see it, sometimes we don’t. Sometimes we catch it in time, sometimes we don’t. But so many little tiny things can be so different from before — even just feeling different — that it’s overwhelming. And the end results can be devastating — failing work performance, failing relationships, failing finances… failing everything.

For no apparent reason.

So, we end up either being hyper-vigilant and always on guard. Or we just give up and go with the flow, because who the hell can keep up with everything that’s getting screwed up? We go into either crisis prevention mode or crisis response mode. In either case, our lives are marked by crisis. One. After. Another.

And that is tiring. It is SO tiring.

So, we run out of steam. It can happen from just being overwhelmed by the sheer volume of adjustments — large and small. It can happen from feeling like we’re under constant attack from within and without — which we often are, as our internal systems are disrupted and the “ecosystem” we have been operating in starts to rag on us because we’re not keeping up. It can happen from being on a constant adrenaline rush, just trying to keep up and respond. It can come from crashes from all the junk food we eat to make ourselves feel less pain… to have more energy… or just take our minds off our troubles.  Usually, it’s all of the above.

On all levels, we’re getting hit — our mental, emotional, physical, and spiritual existence is in turmoil. And it takes a huge amount of energy to keep up.

If we don’t get enough of the right kind of sleep, and we also don’t have the right physical support to keep going, our systems short out. I believe this is why mild TBI folks can actually see worse outcomes over the long term, with problems showing up years on down the line. All the little “hits” we take in the course of each day all contribute to our biochemical overload. There’s more and more “sludge” in our system, in the form of waste from stress hormones processing, to buildup from the junk foods we eat to keep going, and that sludge adds to our overall stress levels, causing us physical stress and strain — which then contributes to our mental and emotional instability.

And years on down the line, when we “should be fine”, things really unravel, and we end up in terrible shape, without any clue how or why — and nobody there to support us, because they don’t know why either, and they probably wouldn’t believe us if we told them.

Keep reading here >>

Found something to help me sleep

Check this out – click here to find it on Amazon (no, I don’t get a cut from your purchase – I just want you to have this)

Okay, so I’ve been functioning on an average of 6 hours of sleep a night — my acupuncturist says that this should be enough for me. I’m getting older, and as you age, you tend to need less sleep.

My neuropsychologist, on the other hand, knows full well that it’s no good for me to get 5-1/2 hours of sleep one night, then 6-1/2 hours the next, and 6 hours the next, and then (if I’m lucky) 7 hours of sleep. They know what havoc it can wreak with me, and there’s none of that fanciful “6-7 hours is more than enough” stuff coming out of their mouth.

I know, myself, that 6-7 hours is nowhere near enough. I’ve been struggling along with about that much sleep, each night, for quite some time now. Months. If not years. I function better on at least 8 hours a night — but I’ve been struggling to get even 7 hours at a shot.

Last night I got about 8-1/2 hours. Woo. Hoo. I went to bed early at 9:30, and I woke up around 6. I woke up actually feeling like I’d gotten some sleep. Pretty amazing. And I’m ready for whatever the day brings, which is a handful of errands, followed by a get-together with friends (and some strangers) to celebrate someone’s pending nuptials.

So, what worked? What helped me get to sleep by 9:30? Well, a couple things:

  • I was actually tired last night – I could feel it in my bones. This is different from how things usually are with me, because I’m usually so tired that I cannot even feel how exhausted I am. I’m wired, pushing through on adrenaline, and nothing can stop me or even slow me down. It’s a terrible way to live, and going to bed is a real chore and a struggle when I’m that exhausted. But last night, I could feel how tired I was. I was yawning like crazy before, during, and after dinner, and I couldn’t even keep my attention on the television, so I turned it off, did the dishes, wrote a little bit, and went to bed. When I got in bed, it felt so amazing to be horizontal and just be able to sink into the mattress and let it all go. How did I manage to let myself feel tired? Here’s how:
  • I had a nap yesterday afternoon. I managed to step away from my work for 45 minutes, and go to my car, which I parked in a remote dark corner of the parking garage. I lay a jacket over my body and face, and after I few minutes of getting comfortable, I slept. I’ve had a hell of a time being able to relax at work. I’ve tried stepping away to sit and meditate, and that does help me at times. But nothing helps like just getting 20 minutes of sleep. That’s the only thing that actually keeps me going. The only problem is, I haven’t been able to come close to feeling sleepy at work. I know I’m wired. I know I’m beat. I know I need to catch some zzzz’s. But I haven’t been able to get myself there. Till yesterday. How did I manage to sleep? Here’s how:
  • I put on my “Stress Hardiness Optimization” (S-H-O) relaxation CD, and I just let it all go. I originally intended to just do the relaxation, but I often end up sleeping when I do that, so that tells me I really needed to sleep That’s what happened yesterday. I got a little turned around with the settings on my phone, and I had to fiddle with that a little bit before I got the tracks to play properly, but I did figure it out eventually, and that was good. I had a some trouble just relaxing at first — which is to be expected. But after a little while, I was able to just relax and let it go… and then I got some sleep. I only slept for 20 minutes or so, which is all I needed. And then I was up and ready to go back into the fray — which is what it is.

I’ve missed listening to those MP3s and I realize that they’re really an important part of my continued recovery and functionality. I have been listening to Belleruth Naparstek, now, for about 7 years. You should really check her out, if you get a chance. I believe she’s got MP3s up on iTunes, and you can get her CDs off amazon.com. I can’t recommend S-H-O enough – it’s literally a life-saver. She’s got a bunch of different recordings — for sleep, overcoming trauma, anger… you name it, she probably has a CD to help with it. Even dealing with dying (if that’s happening in your life, these days). And it helps. The science is sound, and my experience is even better evidence for me.

My experience is really all I need, to be truthful. It tells me, this works.

I found out about Belleruth from a friend who was dealing with PTSD, ’round about the time when I was figuring out my TBI issues, and I went to see her when she spoke, a few hours away from where I live. I was skeptical, at first, because it seemed like so much woo-woo flowery touchy-feely “wellness” stuff, that it turned me off.

But I tried to keep an open mind, and when I heard her talk, and I overheard others at the conference talking about her — and not only frilly psychotherapists, but tough guys who taught inner city public school — I was warming up to her work. And when I read her “Invisible Heroes” book and read about the physiological science behind PTSD and recovery and the role that guided meditations can play in recovery, I was well convinced.

And when I started using her CDs myself, I was converted 100%.

I have listened to her stress hardiness exercises intermittently over the years, and they really helped me, at the start of my recovery. But I got away from it because it started to get boring. And when they upgraded my phone at work, I lost the MP3s I had on my old phone, and I didn’t get around to putting them on my new phone. Yesterday, I had some time in the morning before I went to the office, so I put the MP3s back on my phone, and I’m really glad I did.

I think the thing that works for me — that makes the S-H-O work for me, is that I can turn off my head and listen to someone else do the talking for me. And there’s music that sets a slower pace… and the whole thing is engineered to calm down your system and strengthen you. It’s actually designed for military and first responder personnel, as well as people in intense work situations — the last of which applies to me. I am in an intense work situation, and I need the extra help. Removing stress from my life is not an option — it’s there, and it’s going to be there, and as long as I’m dealing with my TBI stuff (which is all the time), there is continuous stress in my life. So, I have to find a way to optimize my system for it, rather than running from it or trying to get rid of it.

So, I got my sleep last night — 8-1/2 hours worth. Woo. Hoo. This is seriously good news. And now I need to pace myself for my morning and give myself time later this morning after my errands, to listen to S-H-O again and do my relaxation. Maybe even get some sleep. Because the one thing that helps me sleep through the night, is getting a little nap during the day.

It just makes everything more workable. It totally saves my ass. And for power naps and stress hardiness optimization CDs, I am eternally grateful.

Onward…

When life sucker-punches you after TBI

The Concussion Blog posted a great video a little while back explaining concussion

One of the things they talk about in the video is how the “sucker punch” can do you more harm than a hit you can brace for. A sucker punch doesn’t let you get ready to get hit. You just get hit.

The same kind of thing happens with your life after TBI – you have all these “sucker punch” experiences, where you get hit with all kinds of unexpected circumstances, because you think things are going to go one way — based on your prior experience and brain training — but they go completely different, because of your brain being a bit “re-adjusted”. Things that “should” be easy, turn out to be hard. And you can end up in a state of panic and confusion on a regular basis.

This is a problem for a number of reasons.

First, it sucks. It’s unpleasant, it’s irritating, and it can be distressing in the moment when it happens. Your best-laid plans fall apart. Your plans and expectations don’t pan out. And you don’t always know why.

Second, it makes you doubt yourself. One mistake is a mistake. Two are a possible coincidence. Three are a pattern. Four can make you start to second-guess yourself from every angle. And when this happens to you, day in and day out, the cumulative effect is… well… not good.

Third, it hampers your ability to learn new things and re-train your brain.  See, the thing with TBI is you have to retrain your brain and learn new things and restructure the way your brain works. When you are stressed and defensive and confused, it is harder to learn. It is harder to acquire new skills. It is harder to re-train your brain’s connections in the way you want them to be trained. Stress seriously impedes our ability to learn new things — and that’s exactly what you need to be doing after TBI — learning new things.

Fourth, it can trigger a case of PTSD. Not many people out there seem to be paying much attention to this. They seem to think that PTSD and TBI have different causes. But TBI, with its recurring “micro-traumas” can build up a real stockpile of stress and stress hormones and ultimately cause full-blown PTSD to emerge. This is just common sense. When you understand the nature of PTSD as a mental and physical response to unresolved mental and physical traumas, and you understand that TBI can be an ongoing source of traumas that never get cleared out, in part because nobody’s paying any attention and taking them seriously… well, then you’ve got a problem.

What to do? Learn ways to clear out the traumas on a regular basis — physically first, then mentally. Find ways to get your body to clear out the “sludge” that comes from shock and surprise and stress — including exercise, meditation, breathing exercises, rest and relaxation — so that your body isn’t hijacking your brain’s attempts to right itself. If you can find someone to talk to about your situations, who can help you feel supported by someone in your corner, that can help, too. The main thing is figuring out ways to clear out the after-effects of all those little unpleasant shocks and surprises that cross your path on a regular basis.

Speaking of clearing that stuff out, it’s time for my walk. I have about 36 hours left in this vacation, and I’m going to make the most of it.

Onward.

 

Wounds That Don’t Bleed

“Wounds That Don’t Bleed” is a group of people dedicated to bring to light the tragedy of PTSD and the effects it is having on both active duty soldiers and those who reside here in the states.

Their team created this music video on the topic that can be viewed here: http://www.youtube.com/watch?v=2bDSgahGKnk.

You can also check out their website at http://www.woundsthatdontbleed.com and their Facebook page at https://www.facebook.com/WoundsThatDontBleed.

You can also email them at woundsthatdontbleed AT gmail DOT com.

Exploring the link between suicide and TBI

Blogging this from http://www.apa.org/monitor/2012/12/suicide-tbi.aspx from the American Psychological Association

With funding from the Department of Defense, Lisa Brenner is developing a suicide prevention program for military personnel and veterans with traumatic brain injuries.

By Rebecca Voelker

December 2012, Vol 43, No. 11

Print version: page 38

Recognizing opportunities is one of Dr. Lisa Brenner’s strengths. “She meets someone at a conference and realizes a shared interest they have. Before you know it, they’re putting in a grant application together (credit: Kim Cook)

Earlier this year, the Pentagon reported an extremely grim statistic: In the first months of the year, a soldier was more likely to die from suicide than from war injuries. From early January to early May 2012, the suicide rate averaged nearly one per day among active-duty troops — an 18 percent increase from last year. Suicide rates among veterans are equally daunting. According to an estimate from the Department of Veterans Affairs (VA), a veteran dies by suicide every 80 minutes.

In August, President Barack Obama signed an executive order that strengthened suicide prevention efforts for service members and veterans. Among the many efforts being funded and watched by the Department of Defense (DoD) are those of Lisa Brenner, PhD, who is working with colleagues to adapt a civilian suicide prevention intervention for military personnel and veterans with traumatic brain injury (TBI).

Brenner directs the VA’s Mental Illness Research, Education and Clinical Center (MIRECC) in Denver and Salt Lake City, one of 10 such VA centers designed to be incubators of innovative research and treatment. Each center has a specific mission; in Denver, Brenner and her colleagues study ways to prevent suicide among veterans. They have about 30 ongoing research projects. Funding is from the VA, DoD, and non-federal sources including the State of Colorado TBI Trust Fund.

One project explored whether a history of TBI increases suicide risk among veterans and service personnel. “We’re just beginning to figure that out,” she says.

Brenner led a study examining suicide risk in 49,626 VA patients with a history of TBI. The team’s findings show that, overall, veterans with TBI have an increased risk of dying by suicide compared with veterans without brain injuries. This is consistent with findings among members of the general population. The analysis was published in the July/August 2011 issue of the Journal of Head Trauma Rehabilitation.

Brenner is quick to note that more severe brain injury doesn’t necessarily correlate with an increased suicide risk. “The really important point is that TBI is a very heterogeneous condition,” she says. “In terms of death by suicide, research in the field is beginning to suggest that mild TBI is a very different condition than moderate to severe TBI. We’re trying to explore key factors for those with mild or moderate to severe TBIs. We hope that looking at them separately will help us create appropriate intervention.”

Evidence-based interventions for those with TBI are needed, Brenner adds. That’s where her work with Grahame Simpson, PhD, of the Liverpool Hospital/Ingham Institute of Applied Medical Research in Sydney, Australia, comes in. He developed the Window to Hope program, which focuses on relieving feelings of hopelessness among patients with TBI. Previous research has shown that hopelessness is a stronger predictor of eventual suicide than depression. Based on the principles of cognitive behavioral therapy (CBT), the intervention consists of 10 two-hour sessions aimed at building patients’ problem-solving abilities and feelings of hope and self-esteem.

In a randomized, controlled pilot study of 17 civilian patients with severe TBI, the intervention reduced feelings of hopelessness to a similar extent as CBT in earlier studies of depressed patients without TBI. The study is believed to be the first to examine an intervention that’s tailored to address elevated suicide risk among brain-injured patients (Journal of Head Trauma Rehabilitation, July/August, 2011).

With Simpson’s input, Brenner and her team have adapted Window to Hope for military personnel and veterans. The Department of Defense’s Military Suicide Research Consortium (MSRC) is now funding a randomized clinical trial of the intervention within the VA.

Brenner’s Window to Hope collaboration is an innovative research approach for the VA, says Peter Gutierrez, PhD, a clinical/research psychologist at the VA’s MIRECC in Denver and co-director of the MSRC. “This is a much faster way to do treatment development,” he says. “A big chunk of the work is already done, so that allows you to start testing things out much more rapidly.”

Recognizing opportunities for collaboration is another of Brenner’s strengths as a researcher, Gutierrez adds. “She meets someone at a conference and realizes a shared interest they have,” he says. “Before you know it, they’re putting in a grant application together.”

Her dedication to helping brain-injured veterans earned Brenner the Special Contribution Award from the Association of VA Psychologists, presented at the APA’s 2012 Annual Convention in Orlando, Fla. “So far, this has really been a rich career,” she says, “but there is still much work to be done.”


Rebecca Voelker is a writer in Chicago.

The Importance of Team Support on the Road to Recovery

It would be nice to think they exist

I found an interesting article today — about a Marine who did something about the isolation that veterans go through when returning with injuries – especially TBI.

They train together. They fight together. So if wounded, why shouldn’t they go through recovery together? This was the question that Lt. Col. Tim Maxwell asked about his fellow marines being discharged from the hospital and left alone to recover from injuries of war.

“When you’re in the hospital, you are with other wounded warriors. But once you are out of the hospital, it’s tough,” explains Maxwell.

He should know. While on his sixth combat deployment, Maxwell sustained a severe traumatic brain injury (TBI) during a mortar attack in Iraq. When he awoke a month later at the Bethesda Naval Medical Center, doctors didn’t think he would survive. The
shrapnel that penetrated his skull inflicted severe damage to his brain, impairing his vision and leaving him unable to talk or walk.”

Read the full article here (it’s a PDF download). >>

This is the kind of news I love to read – the kind of forward thinking that comes from within the ranks of TBI survivors. I understand that Lt. Col. Tim Maxwell is now retired, but I believe Maxwell Hall is still going.

And I have to wonder if these things are still going on, if they are still holding up under present circumstances, or if the resources and halls and support networks are able to stand on their own, after their founders retire or just can’t do it anymore. I wonder if the “superfriends” ever get replaced when the original members bow out or fade away. Of course, in the comics, none of the Superfriends die or are destroyed. I think… But in real life, does that really happen?

Seldom.

I suppose in a way we are all on our own, and we all have to take it upon ourselves to take steps to get better, when we get hurt or injured. But what about those who just cannot find it in themselves to do that? What about those whose brains are damaged in ways that keep them from even wanting to get better… or that keep them from even realizing they need to improve?

And what about those who go back to lives after their injuries, surrounded by people who neither know – nor care to learn – about what TBI / concussion can do to a person, and who just can’t bring themselves to help.

Yesterday I spent much of the day with a friend who has been through some serious sh*t and could relate to some of the difficulties I have, now and then, with fatigue and light/sound sensitivity. All through their growing-up years, they were in and out of trouble, in and out of institutions, so when I talk about having a tough time at this or that, they seem to get it. And they don’t judge.

I don’t know how much they know about my TBI history – I’ve never brought it up, but my spouse may have mentioned it in past years when I was having a much more difficult time than I’m having now. I just don’t have the heart to bring it up in person. Whenever I try to discuss it with people who didn’t know before, they usually either make some blanket statement about how “smart” I am and how it’s just not possible that I could have any brain issues… or they back away from me, become distant, don’t bother with me the same way the did before. So, I haven’t said anything about it, specifically.

But that didn’t actually matter yesterday, because I could talk about the difficulties I have with getting tired and then having everything crash in on me… or losing my cool and freaking out… or whatever various difficulties come up in the course of my everyday thanks to TBI stuff. I could talk about these things not as TBI-related, specifically, but just generally in my life. The “why” about it didn’t matter as much as the “what” — in other words, I could just discuss the issues without getting into the root causes, and get some feedback about what to do.

And that’s the thing that I have learned will help me, when I need feedback or support — not getting specifically into the TBI-nature of my issues, but just talking about them as I experience them.  So long as I don’t go down the road of “I was brain-injured in 2004, and nothing has been the same since”, and I talk about the things that happening with me just for what they are, I can actually get some useful feedback from people.

It’s the “brain injury” thing that keeps me cut off from the rest of the world. It’s the root cause that is the problem with people, I have found. But when I don’t get into the causes, and I stick with the end result that I need to manage, people can actually hear me and help me out. Or at least not push me till I’m crazy.

And it’s funny – when I first learned about TBI and finally had an explanation for why I was so screwed up and everything was falling to pieces around me, it was like I was finally free. And I thought that telling others and educating them would help them the way it had helped me. But all it did was freak them out. They just couldn’t deal. And everything got lonely really quick. Then I got to a point where I made peace with this loneliness and just focused on my own TBI recovery, understanding how it affected me, and getting a handle on what I really wanted to change in my life. Then I got to a point where I was less focused on the brain aspects and more concerned with the end results and managing them, getting them better. And now I’m at a point where I am mainly interested in having the best life possible, without making everything that goes wrong about my brain’s problems, and making it more about getting on with my life, picking myself up after I fall… and being able to talk to people about my issues in ways that they can hear and support – instead of getting all freaked out about it.

That’s how I get my support, these days. I’m still learning the best way of doing these things, and I still don’t have a lot of friends I can actually talk to about what I’m experiencing. But at least I’ve learned a thing or two in the past four years.

Actually, you know what…? I’m really tired and foggy. I’m really struggling to put words together, right now, and my head feels like it’s packed over-full of cotton. I have been at this computer for the past 2 hours, reading and writing, and I need a break. So, I’m going to pick myself up, change my clothes, then get out and walk in the woods for a while… and be quiet and settled and not worry about much of anything.

And that, my friends, is probably the best support I can give myself today.