TBI Treatment Coverage Should NOT Be “Optional”

Lt. Cdr. Scott Mitchell, officer-in-charge of the Carl R. Darnall Traumatic Brain Injury clinic at Fort Hood, Texas, helps a patient practice with a balance board at the clinic’s Functional Rehabilitation Center

Unless people are living under a rock – which I guess a lot of people are – the question of whether or not TBI treatment should be accessible to all should NOT be optional.

Neither should it be at the discretion of insurance companies.

I know that we’re “still learning” about effective treatments, and the science is still out on some of them, but there are enough approaches out there that have shown great results, that it should NOT a question of whether or not to treat TBI — rather how best to treat TBI.

Of course, no insurance company is going to go for this, right now. But at the same time, I would think that some private foundation or non-profit would realize how important it is to pony up the funds to treat this very treatable condition. Yes, it can be chronic and long-term. Yes, there will likely be ongoing needs and maintenance activities. But it is manageable with the right approach(es), and I don’t see any reason why it shouldn’t simply be done.

Let’s do the math around this.

Say you’ve got a qualified, productive worker who holds down a job that makes them $50,000 a year. They participate in life, with their income flowing back into the economy, and their presence contributing to society’s overall health. Say they have a family — a spouse and a couple of kids, a mortgage, a college savings / retirement fund, and a couple of cars in the garage. Their spouse has a job that earns the same $50,000.

All in all, their total “dollar value” to society is around $100K – plus the interest from their credit cards and the long-term value of their college expenditures. And that’s not including the intangible value they bring to their community. They contribute to the well-being of their employer, and they make their company’s ongoing success possible.

Now, let’s throw TBI into the mix.

Long story short, they lose their job in the six months after their injury. The employer is in it for $100,000 (which is the cost to replace a seasoned worker), and they’ve also lost a top performer who contributed a lot to their ongoing success.

The spouse is now carrying the whole financial burden for the family, as well as everyday logistics, which puts a strain on them and makes it practically impossible for them to function at their customary level at work. The spouse’s employer has now also lost a valuable member of their workforce, and between the time lost to caring for the now-disabled spouse and their reduced productivity, the employer has taken a hit.

Our TBI survivor goes on disability, which costs the government x-number of dollars, and their behavioral, cognitive, and other related problems at home cause their kids a ton of problems, so they end up acting out at school, which puts another drain on the overall system. The kids need counseling, which puts another strain on the system, and given the hell that goes on at home, it’s anybody’s guess whether it’s actually going to work.

Eventually, the TBI survivor does something really “brain-injured” in the presence of the wrong person, and they end up in jail. They go into the legal system, and eventually they end up in prison. That’s another $100K per year society needs to spot them for. And that’s not even accounting for further problems with the kids.

Any number of wretched scenarios can come out of this. And it happens everyday. With people of all walks — and especially veterans (why, by the way, sacrificed so my for US, so that WE can live in peace and prosperity).

All this happens because TBI treatment is in the dark ages… and the techniques that have been shown to work — or at least show promise — have been marginalized as “fringe” so that self-respecting doctors everywhere shy away from them.

As a society, we get what we deserve when we allow this to persist.

But the TBI survivors and their loved-ones? What exactly did they do to deserve it?

The idea that treatment is “unavailable” and inaccessible because of cost is unconscionable.  Yes, some of the treatments are expensive. But people pay far more for things like cars and bottles of wine, than TBI recovery for one person would ever cost. The money is there. And the opportunity for a real “return on our investment” is there, as well.

It just needs to be a priority.

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Joe Rogan Experience #574 – Dr. Mark Gordon, Matthew Gosney & Jason Hall

Talking about the work Dr. Mark Gordon is doing with vets

The fixable connection between TBI problems and the endocrine system

Read more here: http://www.warriorangelsfoundation.org/warrior-treatment.php

Because rust never sleeps

 

Tea catastrophe averted

 

I got a good lesson this morning. I managed to sleep in  till 8:15, with my earplugs firmly wedged in my ears and extra curtains pulled across the windows to block out the light. Even the birds that fill the trees around my house, clamoring for attention from each other and battling for position at the bird feeder first thing in the morning didn’t wake me up, as they often do, ’round about 6 a.m.

I’ve been feeling progressively more under the weather over the past few days, with my balance getting worse and worse and the headache starting up again. Work has been really good – very rewarding and satisfying. But it’s taken a toll, and when I got up this morning — without doing my usual breathing exercise (I did that at 4 a.m. when I was trying to get back to sleep) — I was feeling wobbly and out of it. I had to lean against the walls as I walked to the bathroom, and while I brushed my teeth, I had to prop myself up with one hand firmly on the sink counter.

I managed to get downstairs in one piece, and I made my breakfast slowly, deliberately. I took my time with it, taking care to not move too quickly and put myself off balance. In the past, when I was still dealing with the early years after my last injury, being off balance would send me into a panic and it would throw me off for the whole day, even before the day began. But since I’ve been making important changes in my daily life — including regular exercise — the panic has subsided considerably, and I’ve learned how to handle the sense of teetering on the edge of collapse without having my psyche collapse, too.

And that’s important.

So, anyway, after I had my breakfast, I decided to spend my day reading and writing and checking in with myself. The weather has been pretty wet, lately, and I can’t do much outdoor work. Plus, I’m not feeling well, and I would love to just spend the day reading, studying, and writing. Taking it easy, instead of taking care of everybody else’s business. I put some water in the electric kettle and fixed myself some fruit with crackers and goat cheese and went up to my study to settle in.

After a little bit, I realized I’d forgotten my trusty writing cardigan, and I went back downstairs to get it from the kitchen. While standing in the kitchen, looking around to see if there was anything else I’d forgotten, I heard an odd hissing sound. I went over to the kitchen counter and found my tea mug with a dry tea bag in it, and beside it was the electric kettle, hissing away, nearly all the water boiled out of it.

Now, the way the kettle has always worked in the past, is that when it gets low on water or reaches a certain temperature, it shuts off. This time, it did not shut off. So, I did. And when I looked closely at the heating element, it was showing signs of rust — perhaps from the intense oxidation from the coils evaporating off the water?

I kind of went into a tailspin about this. Yes, I know my alarm was disproportionate to the situation, but I got seriously upset by this and I started to beat myself up over having put water on and then walked away. I won’t write all the things that went through my head, because they are not the kinds of things I care to archive for posterity. Suffice it to say, for a few minutes this morning, I was not my best friend.

But then I realized I was pretty off the charts with my distress — how much would a replacement kettle cost? not very much, really — and it was more about me being absentminded and not paying close enough attention … no to mention feeling ill and “off” this morning. So I was wasting a lot of precious time getting bent out of shape over this. It’s turned out to be a beautiful fall day, and I have given myself permission to take time off to take care of myself. Why should I waste my time and energy beating myself up over a simple case of absent-mindedness that really anybody could have done, too?

Okay, so I established that it wasn’t worth wrecking myself over this oversight. And I realized that this electric kettle is not going to automatically turn off whenever it’s low on water, as I assumed. I would just get in the habit of A) putting more water in the kettle and B) not leaving the kitchen till it’s done heating the water, which takes all of maybe 30-60 seconds. Simple solution, right?

Well, what came up next was the burning question (and yes, I realize this sounds a bit neurotic, but I am not feeling well this morning) about what to do with the “extra” water that I wasn’t using for my tea? See, when I pour water in, I pour exactly as much as I need, so when it’s hot, I don’t have to check the level of liquid in my mug. I just know that I have exactly as much water as I need. If I heat more than I need, what will I do with the extra?

This was the hotly burning question in my fuzzy brain this morning (in the moment it seemed extremely important). I was all up in my head about the evils of waste and getting frantic about not having the exact amount of water I needed in the kettle, and having to gauge how much I was pouring in… and so on.

Ugh.

Then it occurred to me that having the extra water would come in handy for clearing the drain. I’ve been having some problems with the kitchen sink drain getting sluggish. My fix for it is to pour boiling hot water down, and that often works. So, this “problem” is actually no problem at all — in fact, it solves some problems, namely:

  • I need to slow down more in the morning, and this will help me do it.
  • I need to heat more water in the kettle, so it doesn’t fry the coils, and this will let me do that.
  • I need to periodically clear the drain with boiling water, and this will let me clear it daily, so the buildup doesn’t accumulate and become a bigger problem down the line.

So, there’s really no problem at all. Not anymore. But this morning, for about 15 minutes, I was going into a tailspin that threatened to wreck my entire day and set me down a spiraling path of upset — at the innocent electric kettle and at myself for getting so bent out of shape.

The electric kettle is forgiven, and so am I. I know full well that I am off balance, not feeling well, and I am spending an awful lot of cognitive energy just trying to keep myself vertical and not get hurt. I can cut myself a break, and just get on with my day and my recovery from the past week+ of hectic activity.

I’d better cut myself a break. Because rust never sleeps.

Neil Young reminds me of that constantly, while I’m driving to and from work. For some reason, radio stations in my area keep playing his music, and “rust never sleeps” is often what I hear him singing about. My, my,  hey, hey… It’s better to burn out, than to fade away… And this gets me thinking. Especially in the autumn, when the effusive growth of summer is giving way to frosts and withering and deadening, and the cycle of life turns to a cycle of death, my thoughts become, well, a little maudlin. The change of the season gets me to wondering “what’s it all about?” and “is this all there is?” and all manner of existentially angst-y ruminations. And my brain starts to perseverate and lock onto misperceptions and misconceptions and any number of irregular reasons to doubt my ability to live effectively in the world.

Some days, I suspect it’s due to the way my life turned in the course of my concussion-punctuated years. Each injury left a mark on me — a “ding” or two or three in the fuselage of my vehicle that didn’t exactly ground me, but kept me from achieving the heights I might otherwise have reached. I don’t want to blame the brain injuries for my ills — certainly, they have played a part, but they’re not the only reason I’ve had difficulties.

More than the traumatic brain injuries, in fact, I believe that the aftermath, the reactions, the later reactions of others and myself (which were based largely on ignorance about what brain injury does to the personality) and the meanings I gave to those reactions, had the biggest impact. And the time when I was actually recovering from the physical effects, I was sinking into a psychological morass of confusion, dread, insecurity, and the conviction that this temporary situation was permanent, totally screwed me up. After my injuries, my neuroplastic, adaptable brain was on the mend and finding new ways of doing the things I wanted to do, but because those new ways were different from the old ways — and therefore threatening and alarming to me — I discounted them and told myself they were WRONG and I should not be doing things the way I was doing them.

I had it in my head that the roundabout way I learned was Wrong.

I had it in my head that the way I communicated with people was Wrong.

I had it in my head that the way I structured my daily life — much more downtime than most people I knew — was Wrong.

I had it in my head that the choices I made about my social life — who I would and would not interact with — were Wrong.

I had it in my head that the choices I made about my domestic life — not having children and not officially getting married until 15 years into the settled, intricately entwined relationship — were Wrong.

Now, to be fair, there was an awful lot of social pressure to adhere to certain ways of doing things, so I had plenty of reinforcement for judging myself and my choices. And the rigidity of my upbringing didn’t help. But I suspect that the rigidity of my parents and wider social circles wasn’t the only reason I was so locked in, and so quick to judge myself. Indeed, I believe that the head injuries I sustained as a young kid (when I was about 4, then again when I was 7 and 8 ) predisposed me to an intense rigidity that locked out any alternatives to routines or “standard issue” behaviors.

The Brain Injury Association of New York State has a great little tutorial on Flexibility Versus Rigidity In Thinking And Behavior that I really like. (They’ve got a bunch of great material there, especially for teachers and parents of brain-injured kids.)

Here’s a snippet from the tutorial:

WHY IS RIGIDITY/INFLEXIBILITY IMPORTANT FOR SOME STUDENTS AFTER TBI?

Students with TBI or other neurological conditions sometimes demonstrate extreme forms of rigidity or inflexibility. Rigidity/inflexibility is often associated with damage to the frontal lobes, the most common site of injury in TBI. Therefore, some degree of inflexibility is common in students with TBI. This may manifest itself as difficulty (1) making transitions during the school day (e.g., from lunch or gym back to classroom work), (2) tolerating changes in schedules or everyday routines, (3) adjusting to changes in staff, (4) ending an intense emotional feeling, and the like. In extreme cases, a transition as apparently simple as from sitting to standing may be difficult and cause stress.

Related but not identical to inflexibility is the phenomenon of perseveration. Perseveration is a possible result of neurologic impairment and is characterized by continuation of the same behavior or thought or words or emotions after the reason for the behavior, thought, word, or emotion has passed or the thought or behavior is no longer appropriate to the situation. . For example, a student may remain focused on a given emotional behavior state long after the reason for that state has been forgotten.

This pretty much describes me when I was a kid, though today I’d have to say that emotional rigidity and perseveration is much more of an issue than cognitive. Cognitively, I can move on. But emotionally, I’m still stuck. I think that getting out in the world and holding down jobs and having gotten positive reinforcement in work environments has helped me cognitively. I’ve been able to really reap great rewards from using my head, and that’s encouraged flexibility and creativity. Emotionally, though, I get jammed up and stuck. That’s where I get rusty — stuck in place and wedged into an old pattern that doesn’t serve me or the people around me.

No, rust never sleeps. So, what do I do? Do I drive myself onward-onward-onward, in hopes of burning out before I fade away? Do I race at top speed through life and damn the torpedoes?

Um… No. Racing around and pushing myself are the very things that encourage rust. Like the super-heated coils in electric kettle caused the metal to rust, so does my super-heated life cause my system to lock up and show signs of wear. Maybe not in Neil Young’s case, but in my case, pushing for burnout is a sure route to rust. And I don’t have all the time in the world — I’m not getting any younger, and my window of non-fatigued time is significantly less than most people’s I know — so I just don’t have a lot of time to spare, cleaning up after myself when I crash and burn.

That’s no way to live.

What to do?

This is the eternal question, and it keeps coming around with me, no matter how much time I put between myself and my injuries. My first TBI probably happened when I was about 4 years old. And there were two more when I was 7 and 8 years old. More came over the years, including sports concussions and car accident mTBIs, for a total of at least nine separate instances of head injuries that involved some level of disruption of consciousness, followed by cognitive, behavioral, and physical problems.  I never got help for any of them, until about 3 years ago — just a lot of headaches (literally and figuratively) — and only in the past 3 years have I started to systematically and mindfully approach my issues with a focused desire to overcome them.

I’ve learned a lot about how to deal with the basic things — get my exercise regularly, eat right, get enough sleep, and check in with my neuropsych on a regular basis. But as the basic issues get resolved, the “higher level” questions emerge — as in, how to make the most of what life I have left, so that I can have the best life possible, whenever possible?

Ironically, the answer to this question has gone hand-in-hand with the answers to my most basic human needs. The answer is to just slow down and pay attention. For someone who is as driven as I am, it’s a tall order, and not that easy to do. But you know what? When I not only slow down but also pay very close attention to what I’m doing with myself and my life and my choices, many of my TBI related issues resolve.

When I slow down and pay attention to my physical fitness, my joint pain and headaches subside considerably.

When I slow down and pay attention to what people are saying to me, the problems I have with understanding and following clear up considerably.

When I quit going 150 miles per hour through every single day and pay attention to what I eat and how rested I am, my need to pump myself full of adrenaline and push past all sensible limits becomes far less pronounced.

Now, slowing down and paying attention is the sort of thing I’ve had to learn from scratch. A big driver behind my rushing is a constant low-level panic that simmers in my gut, day in and day out. It’s that constant restlessness, the constant agitation that comes with TBI. It’s my brain working overtime trying to find its way through the tangled networks that have developed over the years. It’s my body’s reaction to the intense energy needs of my very-active brain, and the low fatigue threshold I have.

Slowing down and paying attention has been closely connected with my exercise routine, taking the edge off my stress, finding outlets for the nervous energy, and clearing out the biochemical sludge that builds up after countless experiences of surprise/shock/dismay/confusion that come at me in the course of each day, when the things I expect to happen … just don’t… and I need to immediately adjust and move in a different direction to get where I’m going.

That surprise/shock/dismay/confusion is an ongoing situation for me, and it may never change. I may find myself spending the rest of my life realizing I was all wrong about something and needing to find another way to think/act/be. But at least I have my exercise to help me clear out the chemistry of those micro-traumas. And I have an understanding of that bio-cognitive action that lets me cut myself a break and not get all bent out of shape — for extended periods of time — over things that are either directly attributable to my brain having gotten a bit banged up over the years… or are long since over and done.

But even if I do spend the rest of my born days troubleshooting these kinds of cycles of pseudo-drama, I always have my fall-back, my comfort in the midst of the storms — the knowledge that slowing down and paying close attention to what’s going on around me, with heightened awareness and intense curiosity, can and will pull me out of my funks, can and will restore me to some sense of myself, can and will connect me to my life once more, in ways that running around at top speed never can and never will.

Rust may never sleep, but I don’t need to run from it. Ultimately, it’s not the quantity of life that staves off the debilitating freeze, the rust. It’s the quality. Cooling the hot elements, adding more water than I “need”, and just sticking with my life in all its aspects till I find some peace, some resolution, and I can make my tea… that’s what does it for me.

Now, what can I pay attention to next?

For TBI and PTSD, exercise like your life depends on it

Flood damage in Tanzania

Here is a link for Japanese readers who are seeking information on dealing with PTSD

Because it may.

See, here’s the thing – when you’ve been through a truckload of trauma (be it combat, assault, disaster, car accident, traumatic surgery, random violence, or some other life-altering/impacting event that seems like it’s going to kill you), your body responds the way any living organism would. It floods your system with biochemicals to either help you escape or make dying less painful. And if you do neither — you can’t escape, but you don’t die — there’s this huge backlog of chemicals still stuck in your bloodstream.

If you’ve ever been a flood victim, you know what it’s like — the waters rise, sometimes very quickly, and then they recede. When they go, they can take with them some of the most precious belongings you own… they can wash out roads and compromise foundations of buildings, and turn a familiar place into a hellhole. And what’s left, when all the water is gone, is this nasty goo and muck that you have to wash out, sweep out, clean out. Sometimes you can never get it out completely. And the odor stays in that place for years afterwards.

That’s sort of like what happens when you go through intense trauma, and you end up surviving (despite how things looked when you were going through it all). Your body has responded the way it’s supposed to — adrenaline, noradrenaline, epinephrine, cortisol, glucose, and more… it’s all poured into your bloodstream, your muscles, your soft tissues, to help you get through it all.

But once you’re on the other side, even though your body doesn’t need those chemicals anymore, it doesn’t know it. It’s your body. It’s on autopilot. And it’s so fried from the experience(s) it’s been through, it can’t think straight.

Literally.

And you end up extremely jumpy over every little thing. It’s not “just stress” — it’s something much bigger and much badder. It’s your body expecting and planning for more danger, being on high alert — whether it needs to be or not — because that’s what helped you before. That’s what helped you get through. And as your body continues to hyper-react to the world around you (it thinks it’s protecting you, the same way it did before), you end up marinating in this stress chemical soup that becomes a self-fulfilling prophecy and a self-perpetuating loop.

People keep telling you to “relax” — clearly, they don’t understand what’s going  on with you. They just don’t get it.

So, what to do? You can’t go on indefinitely, stewing in your own stress juices. You’ve got to do something. I should know — I’m one of those people who was on high alert for years, thanks to my body being convinced that it needed to be. Couldn’t relax. Didn’t want to relax. Relaxation meant danger. It meant death, to my wired system. Relax? Ha! But still, I just couldn’t go on like that.

Here’s what I’ve done that has actually helped me. In more ways than I can say.

I exercise. Not fanatically, not extremely, like some folks do. But I do it religiously, with a daily discipline that surprises me sometimes. I get up in the morning, do controlled breathing exercises (to counteract out my always-at-the-ready fight-flight response) and then I get on the exercise bike for 10-20 minutes. If I’m away from home, I do some other sort of exercise for 10-20 minutes. I do knee bends. Light calisthenics. Jumping jacks. Anything to get my body moving and get the blood flowing. As I do it, I imagine my veins and arteries and muscles clearing out the gunk from years of always-on alertness, and I breathe into it. I push myself, on and off, to get myself in a frame of mind to focus in and finish what I’ve started. If I’m riding the bike, I do intervals that really make me work at it — I’ll ride hard for about a minute, then pedal slowly for 15-30 seconds, then I’ll ride hard again for about a minute. If I’m not on the bike, I push myself with the jumping jacks or the arm/leg raises.

After the bike or calisthenics, I stretch and then do some light weight lifting. The lifting (I use relatively light dumbbells) is important for building strength to help with my balance and overall physical stamina. It also feels good.

Again, I don’t go overboard with this. I stay focused and keep it limited to about 30 minutes a day, because I have to get on with my day, and I can’t spend all my time working out.

The results, as I said, have been phenomenal. My mood issues — the extreme ups and downs and violent temper flares — have lessened to about 15% of what they once were. Once upon a time, I was very difficult to be around, if I was tired or agitated or anxious. I’m not like that anymore. I’m literally a different person. I look people in the eye. I listen to what they have to say. I am involved in my own life on a level that I never before thought possible. And it just keeps getting better.

So, if you’re struggling with TBI and/or PTSD, I really encourage you to start exercising first thing in the morning. First thing is important, because it gets your metabolism going better, and it also gets you woken up in ways not even a cup of coffee can. It’s good for your head and it’s good for your heart, and it helps you fight off infection and sickness as well as strengthens your whole system.

I’m probably sounding like a religious convert, and in a way, I am. I truly want to testify that the impact on my life has been nothing short of phenomenal. I believe it has a lot to do with me clearing out the biochemical sludge from all those floods of emotion and stress and hyper-reaction over the years of being ON. Seriously — I was so driven, so pumped up all the time, someone close to me once said was the most driven person they knew. At the time, I thought it was a compliment, but now I realize it had a price.

Now, there are experts who say you need to do moderate-to-intense exercise 30-60 minutes a day, 5 days a week. My life was changed (at first) by 15-20 minutes of light exercise every morning… and it slowly evolved into 30-45 minutes of light-to-moderate exercise. Do what you can, and work from there.  But do it.

Addressing the trauma in traumatic brain injury

Source: Scott Butner

As I’ve been exploring the landscape of my head injuries over the past few years, one aspect of my life experience has consistently come to the fore — trauma… and its long-term effects on lives of both survivors and the ones they love and live/work with on a daily basis.

It’s almost a total fluke that trauma should even have this on my radar. But over the years, I’ve befriended — and been befriended by — a number of psychotherapists and counselors, most of whom specialize in trauma. In retrospect, I suspect that many of them have assumed that my difficulties were due to past traumatic episodes — rough childhood, misspent youth, etc. In fact, one of them has flatly denied that my issues could be due to TBI, and they became more and more insistent about me getting a therapist, which was probably the worst thing I’ve ever done, in retrospect. (This friend’s denial is a topic for another post — it’s quite interesting, “clinically” speaking.)

Now, I have to say that after more than 10 years of being around these friends of mine, I get a little tired of every ill known to humanity being ascribed to after-effects of trauma. When I talk about experiences I’ve had and people I’ve encountered who have annoyed me or done some seriously sick stuff, I’ve often heard the refrain, “Oh, they’re a trauma survivor, so they’re dissociating/being triggered/experiencing kindling/re-enacting their past traumas.”

There’s not much room for just being an asshole. For some of my friends, it’s all about the trauma. And in an attempt to better understand what it is they’re talking about, I’ve attended some trauma workshops, as well as read some books. I’ve got Peter Levine on my bookshelf, along with Belleruth Naparstek. And now I’m reading Robert Scaer, M.D.’s  book The Body Bears the Burden, which explains (from a neurologist’s point of view) the effects of trauma on both the body and mind of someone who’s gone through awful experiences — and those whose experiences don’t seem that terrible, compared to, say, Pakistan’s flooding or suicide bombings in Kabul.

The DSM-IV defines a “traumatic stressor” as:

[an stressor] involving direct personal experience of an event that involves actual or threatened death or serious injury, or other threat to one’s physical integrity; or witnessing an event that involves death, injury, or a threat to the physical integrity of another person; or learning about unexpected or violent death, serious harm, or threat of death or injury experienced by a family member or other close associate

The part that interests me is the “direct personal experience of an event that involves actual or threatened death or serious injury, or other threat to one’s physical integrity”. The other parts are just as significant, but I’m not going to speak to them at this time.

When it comes to mild traumatic brain injury, I think sometimes the severity of the experience tends to get downplayed. After all, the injury is mild, right? Well, interestingly, mTBI survivors apparently can show more disruptive symptoms of traumatization after the fact, than survivors of more severe injuries. And these long-term effects  can wreak havoc in the lives of survivors, as well as their immediate circle.

Problems such as fatigue, emotional volatility (emotional lability), rage, agitation, irritability, insomnia, sleep deprivation, anger, temper flares, temper tantrum, anxiety, fear, panic, risk-taking, danger-seeking, not to mention all the crisis and drama that can accompany hormonal spikes during times of stress, certainly don’t make things any easier. If anything, they complicate recovery by flooding the system with stress hormones which interfere with your ability to learn from your experiences. So, at the time when you’re having to get a new grip on your newly changed life with its “new normal,” the biochemical processes going on behind the scenes may be getting in the way.

How maddening is that? At just the time when you need your brain to be able to recover, it’s busy cranking out all sorts of interesting concoctions that specifically get in the way of your recovery.

Because (I believe) there is unresolved and un-dealt-with trauma wreaking havoc behind the scenes.

Trauma in mild traumatic brain injuries is particularly tricky. After all, the injury itself may not have been that dramatic — something gets dropped on your head, or you get in a fender-bender, or you slip and fall down and clunk your head on something. You get up again, walk away from the scene… maybe pay a visit to the emergency dept of your local hospital, get scanned, and you get a “clean” bill of health (and maybe a few pointers on what to watch out for to make sure you don’t have more serious issues later on). Then you’re expected to get on with your life.

But inside your skull, something else is happening. Some of the fragile connections in your brain have been sheared or severed or frayed, and your brain isn’t able to communicate with itself like it used to. On a fundamental, profound level, your very existence has been threatened — only nobody can see it. Even you can’t see it very well, because your brain is either still bathed in the stress hormones designed to keep you from feeling a bunch of pain (and thus preventing you from fleeing an immediate threat), or it’s just not making the connections it “should” in order to give you — the resident owner — a clear picture of what’s going on. Or it could be both things going on.

In some cases, from what I’ve read in Dr. Scaer’s book, the onset of problems can be delayed by hours, even days. So, right after the accident/event, you’re walking around looking fine, seeming to be fine… maybe you’re a little shaken up, but that’s to be expected.  But then you start to slip away… decline… feel the effects of what was supposed to be a mild event that had no serious immediate effects you. In your system, hidden from view, the process of gradual (and possibly debilitating) problems has begun.

This process is utterly maddening. Everyone around you, who was worried for your safety, just wants to be relieved that you’re okay. But all of a sudden, you’re acting strangely, you don’t seem like yourself, and you’re complaining all the time. The complaints don’t get better over time, either. They get worse. And for no apparent reason. People think you’re looking for attention, that you’re trying to “milk” your accident for all it’s worth. They just want you to get back to being your old self. But you’re doing the exact opposite.

And the pressure to return to normal builds, even as your system is being eroded by the biochemical havoc of trauma that was introduced to your system which has not been cleared — it hasn’t even been recognized. How can you clear away what you can’t see/hear/detect?

Indeed, the most insidious and problematic manifestations of trauma take root when the person having the experience is taken by surprise. Studies have shown that bracing for impact limits the impact, but being blindsided makes it worse. And it makes the experience as a whole worse. The body detects this threat to its safety and existence — all of a sudden out of nowhere — and it unleashes myriad biochemical substances for us to deal with it — including endogenous opioids designed to numb the pain of injury. Animals in the wild which are being chased by predators, when there is no way to escape, will often fall down as though dead, their bodies full of chemical substances that will both numb the pain of being devoured and turn them into “dead” prey which might discourage a predator from actually killing them.

The same biochemical process is in place with human beings. After all, once upon a time, we were hunted as prey by animals larger than us. Indeed, we still are, in some cases — the predators happen to be other people, more often than not. In times of combat and assault, when all escape routes have been blocked off and we believe (on some level) that we’re done for, our brains and bodies do their natural thing — they bathe us in substances to protect us from feeling that knife going through our lung or feeling that bullet smash through muscle and bone.

Our brains and bodies are doing their utmost to protect us as best we can. But our minds tend to interpret the experience differently.

In the case of animals who freeze and then survive the assault, they shake themselves, go through a series of shuddering/jerking motions, do heavy, deep breathing, and then pick themselves up and get on with their lives. In the case of humans who freeze and then survive the assault, we tell ourselves we were wusses for freezing the way we did, and we plunge into cycles of self-doubt and conflict, feeling like we failed — when we were simply being the biological creatures we are designed to be.

And the self-perpetuating downward spiral of the PTSD loop starts. Where it stops, is anybody’s guess.

Therapies which have been successful in freeing people from that negative feedback loop are those which engage the body to discharge the sudden burst of biochemical self-protection, and get the autonomic nervous system back into balance. In the completion of the fight-flight-freeze cycle, the body is allowed to return to its most effective ways of working. And we can get on with our lives.

Here’s where the problem starts with mTBI. (Note, I’m not a doctor or certified health professional — this is just my belief system about how our systems interact with the world around us.) If the injury is “mild” then what’s the big deal? Why should we even need to complete the fight-flight-freeze cycle? Wasn’t the injury itself mild? We just got clunked on the head. Big deal, right?

Hardly. I think with mild traumatic brain injury, there may be another aspect of it that comes into play. With “mild” injuries (not that any brain injury is ever mild, mind you), the brain itself perceives the threat on a basic, biological level. It knows something’s wrong, and it kicks into overdrive, trying to right what’s wrong.

I suspect this is why people who have sustained concussions or mTBIs are so prone to denying that there’s anything wrong. Our brains are so busy trying to right their internal systems, that they fail to communicate with the rest of the world — that includes our conscious mind.

Based on what’s happened to me, what I’ve observed, and what I’ve read, here’s the cycle that I believe gets set up:

  1. An individual experiences a sudden, unexpected impact or injury, which injures their brain. This can be a fender-bender, a tackle or collision in a sports game, getting cold-cocked by an attacker, or having something fall on/hit their head.
  2. Fragile connections in their brain are frayed, sheared, or destroyed completely… or all three.  On the surface, they seem to be fine. The injury doesn’t look like that big of a deal. It’s just a bump on the head or a hard hit or a bit of soreness or being dazed after the fact.
  3. The body interprets the impact as a threat to the system, and it unleashes a biochemical cascade of hormones and other neurochemicals which narrow the focus, numb the system to pain, and shunt energy away from “extraneous” body functions.
  4. The injured person’s brain senses something is amiss, and it works like crazy trying to sort out what just happened. The whole body-brain connection needs to be tested to make sure everything is still online, so the system can correct itself as need be. Any outside talk or input is dismissed and rejected — “Are you alright?” isn’t a sign of concern, it’s an intrusion into the vital process of the brain checking through the bodily system for problems. And the brain is so focused on its internal process, that it “forgets” to tell the rest of the world what’s going on. There is no full communication loop with the brain — it’s in damage assessment mode, and it blocks out any input as well as refuses to provide output.
  5. The impacted individual wanders around in a bit of a daze, then they appear to recover, and they get on with the rest of their activities. They drive on in the car, they get up off the bench and go back in the game, they pick themself up off the pavement, or they go back to work.
  6. In the course of going about their business — both immediately and over the course of the coming days and weeks — their brain is having trouble figuring out how to do the things it used to do so effortlessly. The old connections have been disrupted, as though a massive storm had torn through a region, torn up trees, unleashed flash floods, and made many of the old roadways either treacherous or impassable.
  7. The brain senses something is amiss — the inability to do things it used to do before is intensely distressing, and it doesn’t understand why things aren’t working. This confusion represents a “threat to one’s physical integrity” and the body reacts as though its very existence were being threatened. The cascade of stress hormones and fight-flight-freeze substances wash through, and the sympathetic nervous system is activated.
  8. Unfortunately, the incidents of confusion and disorientation and disrupted functioning aren’t intermittent. They can be regularly occurring — as well as unexpected. Time after time, the brain is surprised by its sudden (and unexplained) inability to do what it’s always done. Surprise sharpens the experience, making it both more intense and more indelible in the body and brain.
  9. The brain/mind interprets these inabilities as a problem with the self, and a chain reaction of personal recrimination starts up, which assigns more meaning to the events, which triggers further releases of adrenaline and cortisol into the system when the amygdala is tweaked by this interpretation.
  10. When cortisol and adrenaline are released, higher reasoning is impaired, and lessons which might be learned from trial-and-error are not retained. One misstep after another occurs… one screw-up after another… confusion compounding confusion… anxiety heightening anxiety. What was originally “just a bump on the head” elaborates into a full-scale debilitating condition which becomes more and more entrenched over the ensuing months, even years.
  11. Social pressure doesn’t help at all. Impairments to speech understanding (that happened to me) aren’t interpreted as symptoms of brain injury, rather as laziness or stupidity. Sensitivity to light or sound, which foster distractability and make holding a conversation difficult are not perceived, but the results — wandering attention and apparent oblivion to what others are saying — are obvious (and not at all appreciated).  Social pressure leads to increased stress, which in turn triggers the release of more chemicals that prevent the injured person from effectively learning new patterns and building new pathways in their brain.
  12. The brain is still trying to sort out what’s going on, and it’s not very communicative, either with others or with the “resident” in this body. It gets wrapped up in the drama of flawed interpretations of what’s going on, the crisis of stories it’s invented about what’s going on around it, and the increasing struggle to make sense of anything.
  13. Time passes, and things just seem to get worse. Self-esteem plunges, and resilience declines. Self-recrimination builds, and difficulties at work and at home erode the ecosystem of the impacted individual. Jobs are lost, relationships fail, and money seems to fly away for no apparent reason.
  14. If they’re lucky, the impacted individual can find help from a competent neuropsychologist, counselor, or neurologist — or even friends who are up to the task of helping them get back from the brink. If they’re like all too many traumatic brain injury survivors, they cannot get the help they need, and they end up becoming permanently unemployed (or sporadically employed), with no savings or source of income, no social support network, and no justification for going on disability or collecting insurance payouts.
  15. Muddling through, maybe they make it, maybe they don’t. Ultimately, many end up on the streets, in jail for behavior problems, or on medication for psychological disorders that mimic brain injury after-effects and carry lasting side-effects. And unfortunately, a number eventually commit suicide, hastening the process that an oblivious, uneducated society and tough-it-out culture sets in motion.

As you can see — assuming this progression is at least somewhat accurate (and I believe it is) — the impact of a head injury need not be severe, in order to lead to severe consequences.

To fully understand the pervasive effects of mild traumatic brain injury, you need to look at multiple systems — from the brain’s inner workings, to the autonomic nervous system, to the demands of adult living or childhood development, to the expectations of one’s surrounding social milieu. With mild TBI, it’s never just one issue that sends you down the dark road — it’s a million little, subtle, interrelated issues that combine to create a recipe for disaster that, like bread dough sitting near a hot wood stove, will inevitably begin to rise and expand.

Trauma and the body’s internal responses to perceived threat and our interpretation of those threats, is like yeast added to a sugar-water-flour mix of our injury. With enough heat and time, it’s going to double, triple, even quadruple (and more) the issues that initially come with mild traumatic brain injury. Unfortunately, it appears that our systems are designed to work that way, and unless we can figure out alternative ways to address the issues, we’re in for a rough ride… till we can find help, sort things out, or end up incarcerated or dead.

What strategies and approaches we can hope to employ in this trickiest of situations — which might actually work — is a topic for another post.

Concussion stampede

Source: t3rmin4t0r

Football season is picking up, and with it comes a spate of stories about professional players suffering concussions… then we have stories about student athletes suffering concussions… head injuries on the rise… mild traumatic brain injuries increasing… trips to the ER… stories from individuals talking about either their own or their kids’ head injuries…

You’d think all the world were sustaining traumatic brain injuries.

Then again, maybe we are. I mean, look at the stats:

  • 5.3 Million Americans are currently disabled by a traumatic brain injury
  • 1.5 Million Americans suffer a traumatic brain injury each year
  • 80,000 Americans sustain long-term disability from TBI each year
  • Every 21 Seconds, someone in the U.S. suffers a traumatic brain injury

Source: Neurology Now, Sept/Oct 2006

That’s an awful lot of traumatic brain injuries (which include concussions — don’t let the semantics confuse you). And that was back in 2006 — who knows where we stand now.

That’s an awful lot of people — and only in this country, we’re not talking the rest of the world — getting “dinged”, or worse, and suffering long-term because of it. Crazy. When will this madness stop?

Or will it? I’m not sure it ever will — as far as I’m concerned, head injury is about as endemic to the human condition as promiscuous sex and violent crime. As damaging (and as interrelated) as they may be, and as much as we may try to reduce the incidence, the fact remains that they continue to happen.

It is so very hard to have a healthy perspective on this head injury situation. On the one hand, you don’t want to overreact, but on the other hand, you don’t want to under-state the significance of head injury. It’s serious business. People get badly hurt — even when they don’t look like they’re injured. And they suffer for a long, long time. Some people never rebound. They get lost in the crowd, fall between the cracks, and fade away into their own private hell.

And our culture just keeps churning them out — especially in the sports arena. Between professional football and student sports and cage matches and mixed-martial-arts fighting and extreme sports and the heavy-duty ‘roids folks are on (including student athletes) and the popular fascination with hard hits and rough pastimes… it’s just one big head injury circus waiting to entertain all the folks sitting home on the couch with a cold beer, waiting for the blood to start flowing.

I’m a bit punchy tonight, I’ll admit. But buried deep inside this thought process, there’s a rhyme and a reason. More and more awareness is coming out about brain injuries and the long-term effects of head trauma. More and more players are agreeing to donate their brains to research. More and more air time is given to concussion and who’s on the disabled list this week, thanks to post-concussive syndrome symptoms. More and more stories of chronic traumatic encephalitis are coming out, and more and more tales of soldiers getting hammered by IEDs and other blasts are making the news.

But still we parade on like it’s all good fun — or at least the kind of thing that we should take in stride. You get hit, you go down, you wobble around when you get up, and nobody thinks anything of it, should you keep yourself in play. You get dinged, you drop to the ground, you get up dimmer and slower than you were before, and the game goes on. You get blindsided on the ice, you land hard and have to be carted off on a backboard, and when you’re not back playing in two weeks, the world starts to forget about you. If you do manage to come back (before all the symptoms have really cleared), you’re lauded as a brave soul.

And we think it’s fine.

Why even bother with all the pres and all the stories? Our culture loves its hard hits and its blindside tackles. We love to watch people get the crap pummeled out of them every Monday night. We love to watch our heroes go down, and get up and continue to play, no matter what. We get all hopped up on adrenaline and drama, get high off our bodies’ stress response hormones, and we worship the ground the most risk-taking, danger-seeking players walk on. We love our heroes, and we expect everything of them — except basic human vulnerability, and simple biological susceptibility.

It’s football season, and student athletics are swinging into high gear.

Concussion anyone?

Oh, take two — they’re small.

A million little hits

Source: photolib.noaa.go

Somebody needs to do a study on the cumulative biochemical impact of constantly finding out you screwed up. I’m serious about this – especially for new mTBI survivors. And long-term survivors, as well.

See, here’s the thing – stress impacts thinking. Cortisol mucks with your thought process. Stress hormones block out complex reasoning abilities, in favor of pure fight-flight-freeze reactions. And the long-term effects of high levels of stress hormones do have a cognitive impact.

So, after you sustain a TBI, and you’re in that initial phase of cluelessness, where you are so positive that you’re fine and everyone else is screwed up… and you keep undertaking things that seem perfectly reasonable to you, but aren’t exactly good ideas… and you keep bumping up against your new limitations (I won’t say “newfound” because it takes a while to find them)… all the while, you’re getting hit with these little “micro-blasts” of stress. The plans you make don’t work out. The relationships you depend on start to erode. Your behavior becomes not only mysteriously different, but also uncontrollable and unmanageable, and every time you turn around, something else is getting screwed up. You weren’t expecting it at all. It’s a shock — to your self and to your system.

Lots of false starts, lots of botched attempts, lots of pissed off people… and all the while, the cumulative effect of your body’s stress response to these “micro-traumas” is building up. The really messed-up thing is, that when you’re freshly injured, the experiences you have can take on vast proportions, and every little thing can seem like a monumental event. Which makes your reaction to them that much more extreme — a lot more stress hormones get released into your system that might otherwise, if you had a sense of perspective that was proportional to the actual events of your life.

But no, when you’re freshly injured, EVERYTHING can seem like a

Big Deal.

Of course, you have no reason to clear out the biochemical sludge with something like exercise or mindfulness meditation or anything like that, because either your brain is telling you that it’s much more pleasant to sit around and watch television, and/or you’re so exhausted from the stresses of daily living that making additional efforts or changes is out of the question, and/or you’ve got a lot of pain, and/or you don’t have access to the equipment or a support system or good guidance for how to start with something like that.

You’re off in your own private Idaho — no, wait, your own private hell — of watching your life fall apart for no reason that you or anyone else can discern.

After all, it was just a little bump on the head, right?

People have been puzzling for some time about the connection between TBI and PTSD, as though they are two entirely different and distinct conditions. I can tell you from personal experience that traumatic brain injury, even mild head injury, can and does result in post-traumatic stress disorder. Because even though the build-up of stress hormones is gradual and incremental, it still happens. And unless and until you figure out a way to clear out the biochemical sludge of one alarming stress response (no matter how small) after another, you’re going to have a heck of a time clearing your mind to the degree you need to clear it.

Being a mild traumatic brain injury survivor (I’m actually thriving, not just surviving), and having experienced what my neuropsych has called a “phenomenal” recovery, I can personally attest to the importance of exercise and good nutrition in helping the brain recover. I can’t even begin to tell you how “gunked up” I was, when I first showed up for my neuropsych testing. I was a wreck. Just a walking series of screw-ups waiting to happen. I bounced from job to job, just dropped out of a couple, made really bad choices about my money and my career and my home and my relationship, and to those who were watching, I was indeed teetering on the brink.

Now, I’ve been extraordinarily blessed to have connected with a neuropsych who firmly believes (after 25 years of working in TBI rehabilitation and 30 years in neuroscience) that recovery is possible, even probable, and that there is hope of some kind for even the most intractable cases. But even they weren’t expecting me to do as well as I have.

Especially in the last year, I’ve made some pretty great progress, and it coincides with my starting to exercise each morning. I don’t do a lot, most days — just get my heart rate up for 15-20 minutes, then stretch, then do some light strengthening exercises. The main thing is that I get my heart and respiration rates up, and that I jump-start my system. This is something that anyone can do — and you don’t need special equipment to do it. We all have bodies, and most of us are able to exercise them enough to get our heart rate and breathing up.

This is key. I can’t say it enough — to help clear out the buildup of stress hormones in the body which can impair thinking and make the aftermath of an mTBI even more challenging than it is already, exercise helps like nothing else.

What’s more, it oxygenates the brain and it stimulates the parts of the brain that learn and heal. How amazing is that? Very, very cool. Even after a long period of difficulty, as the folks at the Concussion  Clinic at the University at Buffalo have found, regular exercise can clear away “stuck” difficulties of post-concussive syndrome. One of their study participants even got back to a way of being that was better than he was before his six concussions or so — according to his mother.

Why does this work? How does it work? There are lots of possible explanations, but at the core — for me — it’s about giving your body the ability to deal with the constant onslaught of surprise and alarm and reaction to situations which emerge (often blindsiding you) in situations where you thought you were fine. For me, it’s very much about giving your body the ability to return to balance, to homeostasis, so it can just get on with living life. It’s about clearing out the cortisol, the adrenaline, the noradrenaline, and the handful of other biochemical substances that our brains normally secrete in order to help us deal with emergencies. Humans don’t have the same ability as animals, to clear this stuff out. Rabbits and antelope will shiver violently and shake and run around to clear out their biochemical “load”, but humans just end up hanging onto it, for better or for worse.

But, you may say, having things turn out differently than you expected isn’t such a big deal. Why would that be so stressful?

Trust me, when you’ve sunk a whole lot of time and effort into something and your self-image and survival (i.e., job) depend on things going the way you planned… and then things turn out to be screwed up in a way you hadn’t anticipated, and everyone is all worked up and pissed off and gunning for you ’cause you wrecked things (again), it does produce an extreme reaction. Especially in someone who has to contend with the extreme emotions and volatility, uncontrollable anger, rage, inexplicable confusion, and all that crazy anxiety and agitation that go hand-in-hand with traumatic brain injury. Even folks with “mild” injuries have these kinds of issues, and it can exacerbate and compound matters to no end.

Ultimately, if it builds up enough (and let’s not forget the embarrassment and shame and confusion that can be socially isolating), it can all become utterly debilitating. Disabling. And all because our  bodies haven’t had a chance to recover adequately from all these little incremental alarms, shocks, and other reasons to get pumped full of adrenaline and cortisol.

So, it’s important to not gloss over the effect of those million little hits. Inside our bodies and inside our minds, they do add up. And as our bodies accumulate the sludge of fight-flight-freeze, our minds are affected. Fortunately, there is a way to deal with it — exercise. Vigorous to a degree that gets your heart and respiration rate up.

Don’t have access to a gym? So what? Take the stairs instead of the elevator. Don’t have a set of weights? Big deal. Carry around some heavy stuff in your home. Don’t have an exercise bike? Do some knee bends, jumping jacks, and run in place. Swing your arms around. Stretch and move. Just get going — enough to get your heart rate up and create a noticeable difference in your body.

Now, I’m not saying it can fix things overnight. It’s taken me a year of consistent effort and commitment to get to this point, and when I started out, it was about the last thing I wanted to “have” to do each morning. But I wasn’t making the kind of headway I wanted to in my recovery, and the doctors were starting to talk about putting me on meds for my attention and mood issues. Given the choice between pharmacopia and 15 minutes of exercise each morning, I went with the latter. I’ve done the drug thing before, and it just made my life that much worse. I can’t go back there again. I just can’t.

So, I started getting my butt out of bed, and am I ever glad I did. I’ve read about biochemical stresses and PTSD in the past, and I’ve read about how animals can clear out the “soup” but humans can’t. But until I started exercising and got clearer as a result, the full impact of what I’d read didn’t sink in.

Now it’s sunk in, and it makes total sense. TBI can very much lead to PTSD — by right of the constant barrage of surprise and alarm and shock (not to mention our tendency to over-react to the unexpected or unfortunate events in our lives) which bombards us with stress hormones that don’t automatically clear themselves out of our sensitive systems. Given that TBI survivors’ systems tend to be even more sensitive after our injuries, it’s all the more reason to get up and get moving.

If you’re still sitting down while reading this, please get up off your butt and move. Your brain — and your life — will thank you for it.

Choosing hope, requesting help

Red Sunrise - Source: Wikimedia Commons

I woke up today in a state of total, unremitting despair. All the world, it seemed, was caving in on me, and there was no place for me to turn. Looking around my life from the central point of my bed, all I could see was difficulty and challenge, no help to be had anywhere, and I was convinced that I am utterly alone in the world.

How could I help but weep uncontrollably, which is what I did. I was alone in the bed — my spouse and I have been sleeping in separate bedrooms for over a year, now — and even if I had been in bed with my beloved, it would have just made things worse. I would have set them off. And then we’d be off to the races.

I haven’t talked much (at all?) about the health issues my spouse has, but they are fairly serious. Life-threatening, actually. Life-changing. They’ve pretty much been disabled and unable to work since 1996. I don’t talk much about it, because it’s a never-ending saga of two steps up, one step back, one step up, two steps back. It’s exhausting even to think about it, so I don’t write about it or talk to others about it. It’s actually much easier for me to be a caregiver mostly by myself, without needing (with my confounded communication and organization issues) to explain in detail to everyone around me what I need, what they need, what will help, what will make things better.

One of the big drivers behind me trying to figure out this TBI business, is that my injury in 2004 severely curtailed my ability to be a decent caregiver and provider. If I hadn’t realized just how much my injury was mucking up my composure and my ability to earn a living — if those hadn’t been a problem at all — I might not be on this journey, right now. I probably could have let it all slide, for a time anyway. That’s what I’ve been doing for years, after all. It’s landed me in all sorts of trouble, but somehow, when the trouble only seems to affect you — and you can still make a living and slide by in the rest of life — it’s much easier to gloss over it.

When you’ve got an ill partner to care for, that changes a lot. Throw in a whopping mortgage and a bunch of other financial and logistical responsibilities, and you’ve got a hell of a compelling case for figuring this sh*t out.

Anyway, enough about me. The thing with my spouse’s health issues is that flare-ups with physical issues tend to trigger extended cascades of panic-anxiety, which are even more debilitating than the underlying physical problems, themselves. And when they are down or in a prolonged panic state, they neglect their physical upkeep, which exacerbates their physical condition.

Their “regressions” can be months-long drawn-out dramas of them needing almost constant positive reinforcement and support, as well as consistent reminders and motivational pep-talks about why it’s good to stay away from multiple packages of high-carb junk foods, and high-fat, high-sugar “treats”. It takes a mammoth effort of will and radical compassion to steer them back on track. They know they should do it, but there are a large number of complications that come into play. It’s just not a simple cut-and-dried case of steady-on. They’ve got a whole raft of issues from many, many years of awful, violent, immediate-family situations and bad relationships, so we’ve got that to contend with. Ghosts live in our home, and my spouse at times seems to have more of a relationship with them, than with me.

Now, once my partner is back on track, it’s good, and they can carry on in the world with relative normalcy. But I never know if they’re going to stick with their routine or if they’re going to feel like “taking it easy” and go off on another bad-food, bad-habit binge… and stay there for the next six weeks. Eating wrong and stopping the exercise and getting away from regular sleep-waking cycles might not seem like that big of a deal, but believe me — mind and body are totally connected, and if they neglect one, the other starts to go. Pronto. So, I tend to be on-guard a lot. Like a little Shetland sheepdog trotting around their perimeter and nipping at their heels to keep them away from the cliff, as best I can.

As best I can… which is not always that great. Over the years, we’ve had some better and worse times, the better times being when both of us were working and fully engaged in life. We have not had the easiest time of things over the past 20 years. We’ve been in extremely dire financial straits several times, nearly got evicted a few times, were on the run from angry landlords and creditors a few times, and along the way we’ve had our share of trashed relationships with people who purported to be our friends but then turned around and screwed us royally. We’re both trusting sorts with big open hearts. That’s the risk you run, when you’re open to people and you see the best they have to offer — you sometimes see a side of them that’s not their “default”, so you end up expecting one sort of behavior, but are the recipient of another.

But that’s another post for another day.

Anyway, lately, my spouse has been a little worse for wear — as have I — over money and work circumstances. They’ve got a couple of jobs coming up that will bring in money, which is great… but they need help doing it. In the past, I’ve helped — I was their main support. But I also over-extended myself, and one of the reasons I’ve gotten brain-injured several times over the past 15 years, is that I over-extended and exhausted myself and I didn’t take good care of my own safety.

Now, all that comes up again — if I don’t help my spouse do these jobs, the money may not come through. Or they may have some sort of breakdown without me around to stabilize them. But if I do help them, I may be compromising my health and possibly my safety. They’ve done events when I wasn’t there, and when the going got rough, they fell apart – which is not a good way to attract new business. So, the pressure is on for me to pitch in and help. Meanwhile, I’ve got this new job and I haven’t accrued enough time to take vacation to help with these gigs, and I worry that the exhaustion is going to impact my performance at work. I’m feeling like if I don’t rob Peter and pay Paul, we’re totally screwed. Both of us. Either way doesn’t look like a good thing.

The most frustrating thing is how none of this can be separated out into my-stuff-their-stuff. When you’re living with someone who has some serious physical and mental health issues, and you’ve got your own TBI complications to deal with, the problems one of you has never just stays your own — you both have the problems.

And that’s a problem.

Which is where I ended up this morning, weeping bitterly and desperately in the isolation of my room. Alone. Completely alone. Screwed. Totally screwed. All the world was closing in on me, and I could see no way out.

How much easier it would be, I thought, if I weren’t around. If I died, my spouse would get my life insurance, could pay off the mortgage, have the place to themself, and wouldn’t be bothered by my outbursts and “rough patches”. The thought has occurred to me a number of times over the years that they’d be better off without me, and it came up again this morning.

But after I’d completely abandoned myself to the despair for a while, eventually I got to thinking…

And it occurred to me that I/we have  been in much tighter spots, with far less resources, far less knowledge, and with far fewer tools to deal with everything, than we have today. Things may look desperate, I may feel desperate, but is that really the whole story?

Let me think…

I think not.

Looking back, I can see — plain as day — how things just manage to work themselves out over time. Things change. It’s the nature of the world, the nature of life. And even though the shit may hit the fan, shit always turns into something else.

Compost.

Or dried chips you can use to build a fire.

What’s more, when I look objectively at my life and compare it with the lives of others in dire straits, I know for a fact that I am not alone. I may not be personally acquainted with everyone who is having a rough time (though many of my friends are), but I know that I am not the only one in this world who suffers. And I know that I am not the only one in search of answers.

No, contrary to all appearances, I am not alone.

And I realized, as I got outside the confines of my poor-me head and really thought about my situation, that the main reason I was in so much pain, was that I was dwelling on the pain. I was dwelling only on the pain. Nothing else.

Which was not the whole story.

The whole story was also about the sun coming up outside my bedroom window, and there was a beautiful pink tint to the clouds.

The whole story was also about me having the presence of mind to plan a nap later today, so I don’t get too depleted.

The whole story was also about me being tight and cramped because I wasn’t taking care of myself — and me knowing what to do about that: get up and exercise.

The whole story also includes the simple, simple fact that doing something as basic as breathing can bring me back into my body, get me out of my head, and infuse me with energy and life that gets me out of the bed with ideas about what is possible — not what’s “impossible.”

The whole story is also about how these friends of ours who are having tough times too, are available to help with some of the things that need to get done, and I am not, in fact the only one who can help. And my spouse, when they’re in a steady place and are actually in the midst of their work (instead of fretting up in their head all the time), is indeed able to tend to their own needs and get help with what they need help with.

They have that skill. They are very in touch with their needs and wants and wishes, and they aren’t shy about speaking up about it. So, I can trust that. I have to trust that.

The other part of the story (I now realize) is that I’m just tired. I’ve had a very busy week, and Saturday was a continuation of that. I’m still in the process of adjusting to my new job and the company, and if I dwell too much on the unknowns, it does a number on my head. So, I need to not do that. Just focus on the work in front of me, immerse myself in that, and get on with living my life.

Do what’s in front of me. Dwell on that. Take things a bit at a time, and just be smart about how I budget my energy. Don’t run around like a chicken with my head cut off, because it’s summer and it’s not going to be a beautiful day forever. Pace myself. Use my noggin and all the experience I have. Chill.

And ask for help when I can.

Things really do have a way of turning around… so long as I stay open to them, and I spend as much time — if not more — dwelling on the possibilities, instead of the dread.

None of us knows the whole story about what is and is not possible. None of us knows how much we’re capable of doing, contrary to all indicators.  None of us has it all figured out, and we probably never will.

Lucky for us.

Making up the difference

The road to Lalu Farm, Bredon Hill

Things are coming together. The weeks are passing, and I’m getting more and more into the swing of my work. I’ve gotten past the initial worry of not keeping up, and I’m going with the confidence that I have in the unseen, seemingly mysterious ways my brain wraps itself around experiences.

Because it does. I can’t explain exactly how or why, but it manages to take care of itself, one way or another. And when I mess up, which I tend to do (being human and all), I sit up, pay attention, learn… and move on. I keep going. I’m a little like a shark, that way — I have to keep moving, or I’ll drown.

Thinking about the unusual ways my life has unfolded, I was marveling this morning at how well I’ve actually done for myself, despite having a very different perspective than most people I know. I guess I’ve had my synapses and axons mixed up often enough, to end up with a brain that’s obviously not like everyone else’s. Or maybe I might have turned out this way, even if I’d never been injured. What-ever. The point is — and I was contemplating this today while I was driving to work… I heal.

I adapt.

I figure this sh*t out and move on.

I always have… even when I couldn’t understand what people were saying to me, and I couldn’t decipher the words on the page in front of me, and people were tormenting me for fun, and when I had a heck of a time staying vertical, and when I would completely freak out at the drop of a hat (literally), and I couldn’t sleep past 3 a.m. for months and months on end.

One way or another, I figured out how to heal, how to move on. I figured out how to abandon the strategies and ways of doing things that used to work so well for me, but suddenly no longer did, for no reason I could decipher.

I think in a way it was lucky that I never fully realized why it was that I was having so much trouble. It forced me to not look outside myself, but to look within. It forced me to buckle down and just figure things out. Not many people were  cutting me any breaks, coming to my assistance, etc. And the ones that tried often screwed everything up. And then they’d get pissed off at me(?)

The usual expectations of growing up and performing on par with everyone else were totally on me, even though I was often not up to fulfilling them for a very good reason. I didn’t start out being up to it, but eventually I often figured out how to get myself up for it. The same pressures, the same tasks, the same responsibilities as everyone else around me had, were laid squarely on my shoulders. And I had no excuses. I had no reason for my start-stop life. I had no explanation for why I was the way I was.

So, I had to make do. I had to figure out a way to make up the difference.

There was no point in struggling to hang on to old ways of doing things. There was no “old” way of doing things, because countless things I tried and did often ended up in the crapper before my activities could become habits. I’m not sure my life has ever allowed me the luxury of developing certain habits for long. Something was always happening to screw things up — little did I know why.

But that’s not important. The important thing is, I adapted. I changed. I shifted my focus. Because I had to. No excuses. No explanations allowed. Not even a plausible reason for my track record of underachievement was permitted. It screwed me to the wall countless times, but it was also necessary for my growth and development. No matter how hard it was, no matter how much I struggled, no matter how intensely painful it was, none of that mattered.

All that mattered was the results. That I did what I was supposed to. That I lived up to basic expectations — and paid the piper, if I didn’t.

It’s interesting — I’ve been having ongoing conversations with people here and there about our “culture of accommodation”. And the same people who publicly support accommodating people with disabilities, secretly admit to not wanting to cut everyone a break just because they have a tough time of things. Sometimes, you just gotta suck it up and get on with your life.

Now, I’m sure I’m going to ruffle a few feathers with this little missive, but I have to say, if people had accommodated me throughout the course of my challenging life, I doubt very much that I would have gotten as far as I have. Truly.

Making up the difference. It’s made all the difference.