Helping our troops during the holidays

Our troops helped us, now let’s help them

The food has been eaten, everyone has returned home, and the weekend awaits. For those who thrive on social activity, being alone after being with so many loved ones can be difficult.

Looking for a way to get out of your post-Thanksgiving funk?

Send a card to a service member. The Red Cross is having a Holiday Mail for Heroes campaign – get details at http://www.redcross.org/support/get-involved/holiday-mail-for-heroes – for folks to write cards to service members to wish them all the best for the holidays.

Each year the American Red Cross provides assistance to more than 2 million service members and many of our nation’s 24 million veterans. We support military families, military and veterans hospitals and provide emergency communications across the globe. And once a year, we get the joy of delivering holiday greetings to veterans, military families and active-duty service members at hospitals and installations around the world.

The cards and personal messages, sent by tens of thousands of Americans, provide a welcome “touch of home” for our troops during the holiday season.

Send a Card

Each year we collect cards between October and early December and then distribute them at military installations, veterans hospitals, and in other locations.

There are several ways to be part of the Holiday Mail for Heroes program. In addition to sending cards on your own, you may want to start making plans to host card signing parties or card making parties. Here are a few guidelines to help you on your way:

Card Guidelines:

Every card received will be screened for hazardous materials and then reviewed by Red Cross volunteers working around the country.

Please observe the following guidelines to ensure a quick reviewing process:

  • Ensure that all cards are signed.
  • Use generic salutations such as “Dear Service Member.” Cards addressed to specific individuals can not be delivered through this program.
  • Only cards are being accepted. Do not send or include letters.
  • Do not include email or home addresses on the cards: the program is not meant to foster pen pal relationships.
  • Do not include inserts of any kind, including photos: these items will be removed during the reviewing process.
  • Please refrain from choosing cards with glitter or using loose glitter as it can aggravate health issues of ill and injured warriors.
  • If you are mailing a large quantity of cards, please bundle them and place them in large mailing envelopes or flat rate postal shipping boxes. Each card does not need its own envelope, as envelopes will be removed from all cards before distribution.

All holiday greetings should be addressed and sent to:

Holiday Mail for Heroes
P.O. Box 5456
Capitol Heights, MD 20791-5456

The deadline for having cards to the P.O. Box is December 6th.
Holiday cards received after this date cannot be guaranteed delivery.

I’ve dug up a big box of old Christmas cards that, for one reason or another, I could not use in the past. Some of the messages don’t work for my family and friends, and some of them are extras I couldn’t use. I’m going to start writing out cards this weekend, while I have some extra time. And then I’ll send them all out in a big batch next week.

It’s a start. I can also pick up those big batches of cards that are mixed collections, and send them along as well. I’ve got almost 80 cards I can use right now — I have to pace myself, because my hand cramps up, but I should be able to make good progress by December 6th.

This is a great way for me to get out of my head and think of others during what can be a very difficult time — especially if you’re laid up in the hospital and you’ve had your career cut short by a terrible event.

Being cut off from the ones you care about most — your family, your brothers/sisters in arms, your “tribe” of choice — can feel like the hardest thing in the world during the holidays.

So, reach out and send a card to someone who needs your help and encouragement. Heaven knows, there are many, many folks like that out there.

Okay, enough about me. It’s time to write some cards.

Advertisements

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.

TBI/PTSD anger management by using the breath

Breathe
Breathe in... breathe out... relax

I just found this poem, while looking through WordPress for blog posts on anger. It says so well in far fewer words, the same thing I’m about to elaborate on.

I’ve been studying a bit of breathing over at coherence.com and also thinking about things I’ve read there. I’ve also been studying sitting zazen, as it’s described by elders who have been practicing it for many decades, and I am struck by the similarities between the two.

Now, breathing can take may shapes and forms, and different people have different ideas about how it “should” be done. I’ve actually been criticized by friends who thought they’d been taught the “right” way to breathe. They said I was breathing too shallow, or too fast, or not having the right posture.

I appreciate their concern and wanting to help me, but … whatever.

And then there’s the formally trained respiratory therapist I came across, years ago, who said that there is no wrong way to breathe. And that was a real breath of fresh air for me — literally and figuratively.

Anyway, in my reading about Coherent Breathing, I’ve come across the concept of “Breathe… then relax.” Now, I don’t know about you, but I was usually told “Relax… then breathe” but it never quite did it for me. When I read up on coherent breathing, I understand why — because you need to give your body what it needs to relax. You can’t just order it — RELAX!! — and demand that it comply. But if you give your body what it needs to relax — a balancing of the sympathetic and parasympathetic nervous systems, which gives them both equal time and lets them work together, instead of at odds — you actually CAN relax.

I’ve come across more and more talk about the autonomic nervous system (ANS) — the combination of fight-flight sympathetic and rest-digest parasympathetic nervous systems — when I read the writings of elder (or deceased) lifetime zen / buddhism practitioners. While everybody else seems to be fixated on things like mental calm and personal peace and spiritual enlightenment, they focus in on the basic physical components of calm and peace and enlightenment — the balancing of the ANS.

This, they say, is the foundation for what so many seek. And yet so many are focused on things other than their bodies.

Now, I’m not going to spend a lot of time yammering about all the high-minded stuff right now. What I AM going to talk about is something very basic, very essential, very critical to TBI and PTSD recovery* — Anger Management (*and yes, for those who believe they are chronic lifelong conditions that you can never completely cure, I’m going to use the word “recovery” anyway — in the sense of recovering our composure, our presence of mind, our human dignity, our relationships, our futures).

My own Anger Management, I am finding, is made about 1000-times better, when I use steady, conscious breathing to keep my ANS in balance. See, here’s the thing — I hate to admit it, but I get anxious really easily.  I also am prone to panic attacks, which I would never admit until this past year — heck, I didn’t even realize I was having panic attacks!

Now, I used to be pretty chill, but since my TBI in 2004, all that gradually went away. I believe it’s because of a combination of physical biochemical changes that took place when I fell, the constant restlessness that feeds my brain’s agitation, and the repeated abrupt, jarring surprises I had, time and time again, when my brain wasn’t working the way I expected it to. Any way you look at it, I can be a real ticking time bomb, if the conditions are correct.

Now, this has been a HUGE problem for me and my family — I also had a lot of problems with this when I was younger (and having a concussion or two about every year or so). But I never made the connections or figured out what would help me chill out my anger, till pretty recently.

See, the thing is, everybody I’ve ever talked about has approached anger management from a psycho/spiritual standpoint. They’ve encouraged me to “get in touch with what’s bothering me”… to “learn to love myself”, to “make peace with my shadow” and learn to “dance with my demons”. All good advice. But it’s all geared to a level of experience that is a symptom of my agitation and rage, not the cause.

The REAL cause of my anger management issues? I believe it is, was, and (almost) always has been, an out of whack Autonomic Nervous System — a hair-trigger fight-flight sympathetic nervous system taking over and pushing my rest-digest parasympathetic nervous system out of the way, like a bully shoving a “sissy” down into the mud and stomping on their head.

Flying into a rage over the slightest thing? Not because I wasn’t “my own best friend” — rather, because I was tired and agitated and I flew into fight-flight mode on an instant’s notice.

Getting pissed off while in traffic and getting aggressive towards other drivers? Not because I projected my own insecurities onto them — rather because I was already on edge about being in traffic, I was already in fight-flight mode with my amped-up SNS, and all that adrenaline just fed on itself to make itself even more virulent and aggressive.

Melting down and flipping out over seemingly small issues? Not because I was spiritually damaged or had some character flaw — rather, because I panicked, plain and simple, and it came out as a melt-down.

Holy smokes… if I’d known this just five years ago, how much different could my life be right now? I’m telling you, seeing my anger outbursts and hair triggers as a physiological phenomenon, not some sign of psycho-spiritual disturbance, makes all the difference in the world. It instantly makes the challenges about something other than my broken self, and turns it into a physical situation that I have the tools to manage.

Again, let me say it loud and clear:

Anger issues, for me, are NOT about psychological problems, emotional damage, mental illness, or a defective character. They are about my fight-flight sympathetic nervous system being in an uproar that drowns out my system-balancing parasympathetic nervous system. Anger issues, temper outbursts, rage attacks are all reliable signs that the innermost “wiring” of my body is in need of some attention. And when I give it the attention it needs, it chills everything out in a way that doesn’t just fix it once — it lasts.

So, how do I give it the attention it needs? By breathing consciously. I breathe slow and steady into my gut, feeling my belly expand when I inhale, and filling up my whole chest cavity too. I count my breaths, focusing on them instead of all the crap that’s going on outside, and it keeps my mind from falling into the trap of someone else’s mind games, or some mistaken perception I have. When I focus on my breath, not only do I take a break from the soul-sucking drama, but I am also strengthening my whole system for future times when I need to keep balanced and sane.

I am training myself for future times when I am so bombarded, I have trouble keeping my presence of mind to breathe. The more I practice, the easier it becomes. So, it’s important for me to practice.

On the one hand, this really excites me that I have figured this out. On the other hand, it really bothers me that it’s not more widely known and used. Rehab facilities could be using this… recovery groups could be using this… hospitals could be using this… therapists and counselors could be using this… occupational therapists and physical therapists could be using this… and so could family members who want to help both their injured loved ones as well as themselves. Trauma survivors of all kinds could be using this, including traumatic brain injury survivors, particularly mild traumatic brain injury survivors, who often lose more in the long run than you’d ever guess or expect.

I think part of the problem is that when people find something that works, they instantly become very strict, rigid, and orthodox about it — they decide what the rules are, they tell people the rules (with the best of intentions), and then they enforce those rules to no end.

I’m in the position, myself, where I’m not a big fan of strict rules and regulations. I think everyone is different, and we all need to find our own ways. What works for me, might not work for you, so you have to figure out what’s most appropriate for your situation.

But I do think it’s helpful to understand the underlying “mechanics” of how this all works — to understand the physical principles behind what you want to achieve, so you can figure out the best way to do it for yourself.

Try the conscious breathing thing… counting your breaths, or just noticing how you feel when you’re taking slow, measured breaths. It’s free, it doesn’t require a trained professional to teach you to do it, you can do it anytime — no scheduling required — and you can keep practicing in many different situations, to gain your composure and strengthen your sense of self.

Conscious breathing for anger management… Try it. You might like it.

Or, as Miro says at http://warriorpoetwisdom.com

When people think of warriors
They think of blood and death
The truth is that a warrior
Is all about deep breath

The importance of a one-track mind

Staying steady – it’s about the only thing that saves me. Staying focused on what is important to me, what matters to me, what drives me in life. Truly, without knowing these things — what I’m willing to live for, what I might even be willing to die for — it may sound old-fashioned, but it’s the stuff of my life.

In today’s world, we are surrounded by constant enticements to stray off course. Media tempt us with a constant stream of engaging images which ultimately bring us nothing other than a moment’s entertainment. Advertisers and marketers interrupt us constantly to tell us about things they would like us to buy. Everywhere we look, everywhere we go, people are vying for our attention, and for those who have trouble staying on track, it can be murder.

It can literally wreck your life.

So, it’s up to us. It’s up to you. It’s up to me. To stay focused. Steady. Intent. It’s important not to take ourselves too seriously, but at the same time, don’t fall into the trap of discounting yourself and your values for the sake of some brief relief — fitting in, “taking the pressure off”, or whatever other reason you have for straying from your path.

What IS your path? What matters most to you? What do you want to devote your life to? Your family? Your country? Your job? Your home town? What? What matters enough to you, that you will get up early each day, and stay up late each night, in order to do it? What matters so much to you that you willingly forego personal comforts and convenience to do/have/achieve it?

These are important questions. Especially when it comes to TBI recovery. I am thinking particularly of the servicemen and women who have sustained TBI’s in the course of their service, who now come home to a life they may not recognize, in a country that owes them the world, but cannot/will not help them.

To these folks I say, “Find what matters to you. Find others who share those same values. Find your tribe, your home, your extended family. And put everything you have into serving your common cause.”

To all of us, I say, we should do the same. Find what matters most to us, what drives us, what feeds us, what keeps us going, no matter what. These things can — and do — save lives. Because they hold our focus and they keep us on track, when all the rest of the world is being pulled in a million different directions by a million different messages, very few of them are actually true.

Stay the course. Find your spark. And keep on keepin’ on.

Everything changes – let’s get past the guilt

Just look around… Seasons change, the world changes, political movements rise like tides – or tsunamis – and people change.

That includes people with traumatic brain injury. When you injure your brain, whether you know it or not, something has changed. Sometimes the change is extreme and immediately noticeable, and sometimes it’s hidden and the changes emerge only after weeks or months, even years. And if that change has been gradual and practically invisible (either because the physical changes evolved over time, or the TBI survivor is not well able to detect those changes on their own), it can be incredibly daunting to understand just what those changes have been, and what you can do about it.

At times, it may seem like nothing  can be done about it. Especially if the changes are gradual and fundamental — personality changes taking place over time in ways that you can’t exactly pinpoint when/where/how it all started. Going from being an even-keeled, easygoing individual… to an anxious, agitated person with a hot temper that will come out over nothing at all just when you least expect it. Going from mellow and easygoing to uptight and raging is a pretty extreme change, and it can look like it’s impossible to ever make it back to mellow.

But things change. People change. I’ve changed an incredible amount, just in the past three years. In the past six years, actually — the first wave of change was a result of my TBI in late 2004. And the second was as a result of my rehab. The first wave of change was unexpected and constantly traumatic in large and small ways. The second wave of change was planned and hoped-for, but to be honest, I’m not sure anyone but me really expected it to happen.

Those closest to me who saw the initial extreme changes in my behavior after my fall in 2004 were deeply skeptical about my recovery. They had to live with me on a daily basis as I became increasingly erratic, agitated, and withdrawn (and a little bit dangerous, to be honest). They were the ones who had to deal with this new person I’d become for reasons they could not understand. They were the ones who bore the brunt of my erratic behavior, my temper outbursts, my hurt and rage and fear and anger and lack of impulse control. They were the ones who had to deal with me flying into a rage, throwing things, attacking them verbally, and doing things that hurt them on a much larger scale — losing my good job and not being able to hold down steady work for longer than a year or so, not managing money, not taking care of the house, not being a present and responsible family member.

All the while they couldn’t protect themselves from that, because if they said anything, I would fly into a rage with them and become even more unpredictable.

The ones who were affected like this have had the hardest time seeing the potential of my recovery. They have hoped for precious little, to be quite honest, having seen how bad I could get. They got into the habit of handling me with kid gloves, treating me like a mentally impaired loser who needed to be coddled and kept cool at all costs. They had gotten used to the routine of carefully checking me out to see how I was, and then walking around on eggshells to keep me calm and non-agitated.

The human brain is an amazing thing. It watches for patterns, it identifies recurring dangers and situations, and it reorganizes your behavior in order to minimize risk and maximize safety. And the brains of those closest to me had become reorganized around the idea that I was pretty much a lost cause who would generally give things a good effort, but would never really amount to anything, and who would — as likely as not — end up in a temper flare-out that ended badly for everyone.

You know, it’s interesting how nobody really seems to talk about mood problems and anger/temper outbursts with traumatic brain injury. At least, not while the person is alive. One of the remarkable things about reports about CTE (chronic traumatic encephalopathy – the brain disease similar to Alzheimer’s that has been found in the brains of former pro football and hockey players — as well as a student football player), is that just about everyone talks about crazy-ass mood and behavior changes taking place after the person is dead and gone. But while the person is alive, there’s nary a hint that something is amiss.

Take for example  Shane Dronett, Bob Probert, Dave Duerson, and many other players who have posthumously been diagnosed with CTE. During their downward spirals, their situations didn’t make the news. Part of that, I’m sure, is because their falls from grace — erratic, violent behavior, business failures, unemployment, ending up living in their cars, in and out of jail — are not the sort of thing that people want to think about. Especially if it’s apparent (as it often is) that their situations arose from their former jobs of keeping us entertained by sacrificing their bodies — and brains — without any regard for their own safety. There’s a guilt that is never quite articulated by society at large, not to mention the families and friends of those in trouble.

Society has a hell of a time accepting these sorts of dissolutions. And friends and family too often feel responsible, as though they’ve somehow brought the violence and outbursts and erratic behavior upon themselves.

And then there’s the guilt of those who ARE in trouble — the confusion, the frustration, the anxiety, the depression. The constant trying to make it better, followed by recurring failures. Guilt and shame. Resolutions to try again… and then abject failures that can’t be explained.

One of the worst things about TBI is how it can strip you of your dignity. And when the people around you see — and are horrified by — your descent into behavior that is so “unlike you” that shame and guilt can be well nigh impossible for anyone to get past. People look away from what makes them uncomfortable. They distance themselves from aberrations. Want to become invisible? Present as someone with a disability of some kind, and watch people avert their eyes. Like Kevin Spacey’s character in The Usual Suspects, if you exhibit some sort of behavior that makes others uncomfortable and you don’t seem to be able (or willing to) change it, you can find yourself marginalized pretty quickly.

The problem with all this is that with TBI, one of the most important elements to recovery is social interaction. Connection with others. The ability to have community and connection with others. We are social creatures. We crave connection. Our brains are social organs that grow and change and adapt, based on social interactions. And when we are pushed to the side, marginalized because of our perceived differences, it just makes matters worse. It doesn’t give us a chance to come back to a place where we can be the persons we want to be, instead of the persons the TBI ushered in. It doesn’t give us a chance to practice our “social chops” and grow and improve and change for the better. Without feedback of some kind that tells us when we’ve succeeded or fallen short, recovery stays elusive. The traits and qualities that head trauma ushered in have a way of cementing themselves in place, essentially becoming the “us” that others decide we are.

That’s probably one of the most unfair phenomena of TBI — having others make up their minds about us as being a certain way after TBI, and deciding we’re not going to change, and they need to just get used to us being a certain way. When others do this, and they decide that we’re not going to change, we can get locked inside a prison of human making. It may feel safer for the people around us, if they develop these defense and coping mechanisms, but in the long run, it just makes matters worse, because it allows no room for recovery, and it locks everyone in a pattern of behavior that is far less than it could be.

It’s true — we will probably never get back to the person we were before. But that doesn’t mean we can’t become a different person of our own choosing and our own making. When we decide things aren’t going to change, and we resign ourselves to “accept the new normal” of limited options and curtailed activities, and we stop looking for what else is possible in our lives, we are neither fair nor honest with ourselves. And when we decide that injured others are permanently disabled and need to be handled with extreme care, we are giving up and consigning them to a prison of our making.

Change happens. Change is constant. And people change as much as politics and economics and fashion. We change in relation to events, but most of all in relation to others.  We mirror others. We connect with others. We evolve with others. And even in the aftermath of events that harm and hurt and kill, we can continue to change. Grow. Improve. Worsen. Deepen. Become more complex. Become more simple. We change.

But we need to be connected somehow, in order to do that.

Brianline has a great slideshow about a young woman named Freda who sustained a traumatic brain injury in a freak accident – click here to watch it. Perhaps the most remarkable thing about it, is how Freda’s friends rallied to keep her integrated into their social life, even though she was far removed from the flow of everyday life. Her family stayed with her. Her friends didn’t ditch her. Her teachers and healthcare providers worked to educate her peers about TBI. The community came together around her. And she came back.

For me, the connections that have kept me going  have been largely virtual. Connecting with people online — just about the only place I could find others who understood what I was going through — as well as one single neuropsychologist who didn’t treat me like a drug-seeking insurance fraudster who was just trying to get over on the system. I couldn’t really connect with my friends and family, because they were — and still are — really put off by the very concept of brain injury, and a lot of them had made up their minds about me a long time ago and still remain quite dependent on that interpretation of who and what I am.

The other way I’ve managed to connect is through work — the people at work, as well as the work itself. In that controlled environment, where I actively interact with others for 8 hours a day, five days a week, doing work that refines and educates me, I find a connection and a purpose that often eludes me beyond the workplace. When I haven’t been able to stay on for very long (because my anxiety level was getting so high, I couldn’t think straight anymore), I’ve been fortunate to be able to find new work, different work, to help me along. In the workplace, where I am required to interact with others, I find connections that often don’t present themselves in the rest of my life.

One of the important differences between work and my outside social life, is that there’s no room for guilt. There’s no room for sitting around feeling self-conscious. If I’m going to do my job and be fully effective, I have to engage with others on a regular basis. I have to get over my personal crap. I have to be a part of things. Or else. There’s not a lot of room for self-pity and drama. I know plenty of people who do indulge in those things at work, but for my own purposes, I can’t afford it. I have too much to do. I have too many things on my plate, to get caught up in personal dramas. It keeps me busy and it keeps me honest, and I have to constantly improve, or I sink like a rock.

The nice thing is, others at work can see I’m actively working at this. TBI doesn’t factor in at all in our interactions, because I have never discussed my situation with anyone at work, and I never will. It’s not something that needs to be part of that equation, and the last thing I need is to have to field all sorts of ignorant biases about what brain injury does to a person. It’s enough that I do my job and I do it well. The rest of it stays to the side.

And it’s tremendously freeing. Because I’m not locked away in a box made from other people’s assumptions about me and my prospects for change and growth. I’m not living under the shadow of my wary spouse who detects agitation in me and automatically begins to act like I’m a menace. I’m not constantly trying to prove to my loved-ones that I am capable of change, and that they don’t have to give up on me.

I can be who I want to be. I can be the person I choose to be, not the person others decided I was, 5… 10… 20 years ago.

People change. TBI changes people, but we can continue to change for the rest of our lives, regardless of initial setbacks. We may never go back to being the person we were, but that’s what happens with everyone, traumatic brain injury or no. Ask anyone about the kind of person they were when they were 20 years younger, and they’ll likely tell you they’ve changed a lot since then. If they haven’t, they were either uniquely evolved in their youth, or something has stunted their growth.

It’s in our nature to change. It’s in our nature to grow. It’s in our nature to improve, should we set our minds to it. With TBI comes a host of problems and issues — many of them emerging and sticking around, weeks, months, years after the injury itself. The guilt and shame and embarrassment can be pretty intense — for everyone. When you’re “not supposed” to do/say the things you are doing/saying, it can be pretty distressing for everyone. But you can’t let the distress get in your way. You just have to keep steady, keep an open mind, and keep following through to learn and grow and change for the better.

TBI does bring change. But it needn’t be a death sentence. Mild TBI needn’t derail your life, for no apparent reason. Blast injury has its own set of unique issues, but doesn’t need to destroy your future. And concussion can be profoundly disruptive, but it needn’t isolate you from the world for good.

Stay steady, stay open to change. And find out what else is possible for you and the ones you care most about.

Taking on our own issues

I’ve been reading a piece in USA Today about the care that people do/do not get after TBI. For brain injuries, a treatment gap is a pretty good read, though a bit depressing at times. It’s wonderful that Congresswoman Giffords is getting thorough care, but for the other millions of TBI survivors… that’s just a distant fantasy.

It is really easy to get depressed over this and become bitterly resentful towards the government for subjecting everyone else to insurance and healthcare uncertainties, whilst they have their own special plan that is little more than a pipe dream for the rest of the country. I, for one, cannot even conceive of having that level of care available to me. I don’t rank or rate highly enough for that. As far as the government and Blue Cross Blue Shield is concerned, if I’m in need of assistance, I’m just another liability and a drain that would take away from people with real problems.  “Blue Cross, Blue Shield doesn’t run a science fair. We run a business…” says the chief medical officer of the Blue Cross and Blue Shield Association, which makes recommendations that (BCBS) member companies typically follow. And my life is anything but a double-blind controlled laboratory test. I’m not sure if I’d call it a “science fair”, but I’m definitely on the cutting edge of self-therapy for TBI (and I’m actually winning – so there). For the purposes of formal insurance coverage and consideration by the established money-holders of who-gets-t0-live, my life is a statistically unjustifiable waste of funds.

But when I think about it, I have to say I’m not entirely sure I WANT the government — or the insurance companies or formal rehab — to rehabilitate me. The people and the (official) science and the money and the resources that these institutions have may be helpful and therapeutic for many who need their help, but I hesitate to place my total faith and confidence in them. They are, after all, institutions, and their approaches — while sophisticated and scientific and whatnot — are going to be informed from an institutional point of view. So, whatever personal attention and assistance you may hope to receive from them, is going to be tailored to a scientifically established standard, which may or may not work for you. It’s a real problem, because no two brains are alike, and no two people are alike, so you have this potentially damaging disconnect between what they are offering (and they tell you that you need or should need) and what is truly helpful to you. Plus, with their established standards of care, the folks working for them may be pretty much prohibited from exploring alternative therapies which may work wonders for TBI survivors.

Let’s get honest, people. Government isn’t going to solve our healthcare problems for us. The best that it can do is keep the greed and homicidal tendencies of fiscally driven insurance coverage decision-makers in check. Modern medicine isn’t going to improve our quality of life. It’s just going to keep us from dying from the crap that killed off our great-grandparents, and patch us up after catastrophes. The rest is up to us. If we want to live long and healthy lives, we need to act like we want to do just that — take care of ourselves, eat right, exercise, and stop doing the things that everybody knows will kill them. And we need to stop being so surprised when — after a lifetime of eating junk food, drinking to excess, subjecting our bodies to constant drama and stress, and smoking like chimneys — our bodies turn on us.

A Great Society is all very well and good, and having a government that gives a damn about whether you live or die is nice. But ultimately so much of our care (and rehab) issues come down to personal responsibility. Shared responsibility, too.

Now, I’m sure there are those reading this who protest that traumatic brain injury survivors are not in any position to take full responsibility for their lives — to at least some extent. And I would agree in principle. I myself was so impaired after I had my last fall, that it wasn’t till my life savings was almost gone and my life was in a shambles that I reached out for help. But I do think it’s important to accept your part in shaping your own life. I did, and it didn’t kill me. I would also suggest that when it comes to recovering from brain injury, it’s not just the survivor who needs to cowboy up, but the family and friends, as well.

I’ll spare you my rant about how I feel our society has become far too permissive and accommodating and personalized — to the point where nobody knows what we stand for and nobody seems to get the difference between right and wrong. The thing is, we need to re-learn what family is all about. We need to re-learn what community is all about. We need to stop being so isolated from each other, come together, and support one another in making the kinds of decisions and taking the kinds of actions that enable a person to live a productive and healthy life. We need to start sharing responsibility for each other’s health and well-being. We need to start TAKING responsibility for our own actions.

Even after TBI — especially after TBI — we need to strengthen our grasp on the concepts of cause and effect and get a clue about consequences — AND learn to choose the kinds of actions that will produce the results we want.

Which requires that we stop and think. Not just race from one distraction to the next. It requires that we overcome our impulsiveness — that’s both TBI-related and general socially encouraged — and learn to pause and examine what it is we are doing, and why, and what we hope to achieve. That deepened involvement in our own lives, the honest and courageous examination of what it is that we are doing and how it is affecting others — to my mind, it’s a sign of maturity. And we all need to grow up, at least a little (myself included).

I think there’s a real danger of falling for the false promises that the government will (or even can) help and preserve us in the face of danger. And persisting in the illusion that insurance companies are there to help you when you’re in need of assistance, is bound to disappoint, sooner or later. Insurance — and the government — exist for their own purposes: to survive. And the minute it stops being in their own best interests to allow you to live, you can expect to be cut out.

I’m not (entirely) bitter. This is just what I’ve seen – the cold, hard truth of what these institutions are all about.

And that leaves many, many of us out in the cold. Those of us who are lucky can get help. Those of us too busy (and not obsessed enough) or not living in the right place to find competent rehab help, fall by the wayside. We’re on our own. As are our friends and family members and coworkers. We end up trashing our families, destroying our finances, losing our businesses, living out of our cars (if we can even keep our cars), and eventually ending up on the street or in a nursing home somewhere. Not a pretty prospect, by any stretch. We DON’T end up like Rep. Giffords, surrounded by caring professionals who are at our beck and call. Those same professionals, if they passed us on the street, might very well avert their eyes and walk faster to avoid us, hoping to think of something more pleasant. We DO end up struggling. If we’re fortunate, our struggles pay off. If some weird trick of fate intervenes, they don’t.

I hate to say it, but that’s what it often boils down to — circumstance and fate.

Will broader government intervention help us? I’m not sure. I think it’s tempting to imagine that the VA is going to offer the same level of investment in injured soldiers that the armed forces offer to fully functional ones who are deployable, but I’m not sure that will ever happen. It’s nice to think that medicine is about healing and helping people live their lives, but it is after all a business, so good luck finding that level of care in the medical world. It’s tempting to imagine that one can find the same level of comaraderie and support in society at large, that you can find in fighting units… but in the personalized, customized, convenience-driven society we have built, it’s all about ME, and the rest of you can go pound sand, so I wouldn’t hold my breath on that one.

Ultimately, thinking about all this brings out my libertarian streak and makes me fall back on personal responsibility and personal empowerment type thinking. It also makes me pine for quality online resources where people can turn for reliable, non-commercially driven assistance to help TBI survivors rehabilitate themselves, educate family members about how best to help, and help people rally around each other in a supportive, common sense way. Any time you get money involved (and what is government, other than a way to collect and distribute money to the causes that further its existence?) and you put your hope and future in the hands of people far, far from you – geographically and ideologically – you’re gambling with your future.

That’s a gamble I’m not willing to take. I hate to say it — and many people might take offense at my point of view — but the government and formal medical establishment are about the LAST bunches of people I think should be answerable for our cognitive future. There’s just too much at stake, to lay it at the feet of any machine.

People are involved. People need to solve these issues. Not machines.

The difference between sports concussion and blast injury

Great video over at BrainLine

I learned a lot from this, namely:

  • Blast injury involves both compressing the body and expanding it — during and after the blast
  • Gas bubbles can end up in the bloodstream as a result
  • Hollow organs like ears and lungs are especially vulnerable
  • Blast injury shares elements with sports concussion, but it is much more complex

Great video – worth a watch. Check it out here:  http://link.brightcove.com/services/player/bcpid1670076667?bctid=110843714001

 

 

Broken body, broken mind

Source: freefoto.com

More than ever before, I’m convinced (and riding the bandwagon around the square, beating on my drum) that the body and mind are so closely intertwined, that you cannot possibly separate out the two.

You take care of the body, and the brain will benefit. The mind will benefit, too. I differentiate between the mind and the brain because I believe (like others) that the biological, physiological organ of the brain is just one part of what makes up the mind. When you take care of the body, the brain benefits. And when the brain benefits, the mind has something to work with.

Body-brain-mind connections matter. They have such a profound impact on our health — and our illness. That goes for mental health. It goes for TBI recovery. It goes for effective and lasting healing for PTSD. If you leave you body out of the equation, while trying to fix your brain, your mind may have a hell of a time getting back on track and up to speed.

Now, don’t get me wrong. I don’t advocate that everyone who’s struggling with mental health issues, TBI, and/or PTSD run out and join a gym and get ultra-ripped. I’m not saying that you have to become a competitive athlete or reduce your body mass to 5% (which might be physically unsafe, in any case – our bodies need fat). And I’m not saying that if you’re in poor physical condition, you’re going to be a vegetable.

I am saying that exercise, when done carefully and regularly, can and will benefit not only your body but also your brain and your mind. It’s not blind faith I’m falling back on — it’s scientific fact, documented research, and personal experience. It doesn’t have to be torture, it doesn’t have to involve pain. It can be as pleasant as a walk on the beach with a loved one and your dogs, or perhaps a swim in a beautiful lake. It can be as everyday as taking the stairs three flights up, instead of taking the elevator. And it can be as invigorating as a game of touch football with your friends on Thanksgiving Day.

But if it’s not at all a part of your life, and you’re dealing with the challenges of TBI and/or PTSD, I’d hazard to say that your row is going to be a bit harder to hoe.

By now there is so much documented evidence that exercise and aerobic movement aids the brain, that it’s impossible to ignore. And it would be negligent of me to not beat on my exercise! drum, if I genuinely want to help people overcome the challenges of TBI (which I do).

The fact that exercise is such a simple thing for everyone to get — even in moderate amounts — makes it one of the best-kept secrets of TBI recovery. It’s so secret, even the top experts make passing reference to it, but aren’t nearly as passionate about it as, say, the folks at the Concussion Clinic at University at Buffalo. Watch the “Sportsnet Connected” – UB’s Post Concussion Syndrome Treatment Program for some very exciting developments.

For all the talk about TBI and PTSD among veterans, nowhere do I hear anyone talking about how soldiers returning from Iraq and Afgahnistan can help themselves with exercise. The VA may not have the proper pieces in place for highly effective diagnosis and treatment, and they may be discharging soldiers with inaccurate “personality disorder” diagnoses, but the one thing I see time and time again, when I look at YouTube videos of soldiers training, is gym and exercise equipment. Even gyms built in shacks on the sides of mountains in a godforsaken country far, far from home.

This puzzles me. Why would a treatment so effective and so familiar and so self-directed not be promoted and plugged (especially for soldiers), till everyone is sick of talking about it? Maybe it’s “too easy” and people think that it’s something that’s “extra” in addition to meds and/or directed therapies. Maybe it requires “too much” consistency and people don’t know how to work up the motivation to do it regularly enough to make a difference. Maybe the VA didn’t get the memo about U@B’s success stories. Maybe veterans are waiting for someone else to initiate treatment and get them on the right path.

It’s complicated, of course. I suspect it may also have to do with the professional interests and personal makeup of the top experts. After all, if earning your bread and butter (not to mention your reputation) comes from the control of information and the dispensing of advice and assistance under strictly controlled and controllable circumstances (like your office or a rehab facility), and you feel your professional position is threatened (or you may lose clients to outside forces), you don’t necessarily have a deep-seated incentive to encourage people to do simple, common-sense activities on their own (which provide tremendous benefits without requiring insurance billing codes).

Plus, if you’re a person who’s made your mark in the world sitting at a desk or standing at a podium, and you don’t have a real focus on physical fitness in your own life, why would you even think to recommend exercise to your clients/patients? The personal element to this — i.e., non-athletic individuals (who may have gotten into science and medicine because they sucked at sports) who have an aversion to exercise — should be factored in.

Plus, the focus on the brain and psychology and “mind over matter” that pervades Western science probably hasn’t helped us appreciate the role of the body in the functioning of our brains and minds.

Personally, I don’t have those sorts of conflicts of interest or an individual bias against exercise. Quite the contrary. I love to move in coordinated and sport-like ways, and I’ve got nothing to lose by telling everyone I encounter (or who reads this blog) that exercise can help heal what’s been hurt. And the more I think about it, and the more I use regular exercise in my own recovery, the more passionate (even zealous) I become. Each and every day, this flame burns a little brighter in my belly.

To say that exercising regularly changed my life for the better would be an understatement.  Once I started working out (very lightly and low-impact) each morning before I got started with my day, my anxiety level almost immediately began to decrease. Less anxiety meant less agitation, less temper flares, less acting out, less losing it over stupid shit. It has meant that my spouse can now be in the same room with me for extended periods of time. A year ago, that wasn’t the case. It has meant that I can start out my day without two or three private melt-downs that used to deplete me daily and leave me feeling broken and wrecked even before I left the house to go to work. It has meant that my constant headaches have subsided and my aches and pains which followed me everywhere and never totally went away, did in fact calm down. They’re not gone completely 100% of the time, but they are generally much less intense, and they don’t stop me from living my life, like they used to.

To say that my life between my fall in 2004 and my starting regular exercise in 2009 was getting progressively worse would also be an understatement. All that agitation, that anxiety, and the unstoppable extremes of panic and fight-flight-freeze gushing through my system were tearing the hell out of me. It was more than “just” TBI. It was (I believe) also a sharply spiking case of PTSD that arose from the constant “micro-traumas” of my TBI-addled experience, and it was destroying my life.

My brain was broken, and my mind was, too. In no small part because my body was broken in ways that no one could see.

How frustrating it was. I was trying like crazy to figure things out… totally fogged from my messed-up wiring, all disconnected and confabulated, and cognitively impaired by the daze of biochemical gunk that built up in my system.

It was like driving down a dark, unfamiliar road that’s full of potholes that I kept hitting, with the inside of my windshield fogged up.

Source: stoutandbitter

But then I started exercising. And you know what? Everything started to get clearer. Getting regular exercise each day was like taking a paper towel and wiping away the fog inside the glass. The road was still dark, and there were still potholes, but as long as I kept the inside of my windshield clear, I had a fighting chance. And slowly but surely, the sun started to come up.

Source: Kate Joseph

The road wasn’t particularly well-paved, and there were still potholes, but I could see them, at last, and I could adjust to my circumstances. As long as I was all jacked up on cortisol and adrenaline, I was S.O.L. and hurting from it. But when I started to clear that crap out of my system, I at last had a fighting chance to get on with my life.

My feeling about exercise are similar to feelings among my relatives about being born-again religious converts. There’s something so invigorating, so life-giving about this “new” discovery, that we feel ourselves transformed. And in a way, exercise has become a kind of spiritual practice for me. It gives me new life each and every morning, and even on those days when I’m not feeling as moved as other times, I still recognize the worth and value of this practice.

I would go so far as to say that exercise comes about as close to a “magic bullet” for TBI/concussion recovery, as anything I’ve come across. More and more experience and research is bearing that out, and plenty of TBI/PTSD survivors will agree. And the best part is, it not only strengthens the body and the brain, but it also gets you off the couch and/or out of the house and can get you into the company of other people where you’re less isolated, and you can interact with them in a structured context. TBI and PTSD can be terribly isolating. Having structured physical activity to get you up and out, and also provide a way to control your own social interactions is helpful in so many ways.

Out for a walk? You’re not only giving your veins and arteries and lungs and lymphatic system a much-needed boost, but you can also encounter people along the way with whom you can chat. Having trouble understanding what people are saying to you and following the conversation? You can excuse yourself and walk on, and no one will think anything of it. Feeling bad because you had trouble with the interaction? You can walk it off.

It’s what I do.

And the results have been amazing. (Obviously, not everyone has the same experience, and you’ll certainly have your own, but this is mine.) After hiding myself away for years, I’m back in the swing of things, taking care of what’s in front of me. Granted, I have my down days, and motivation is still a problem with me, but feeling as good as I do (aches and pains notwithstanding), I feel up to dealing with it all.

These results (and more) came after a relatively short time of doing them. Seriously. I started seeing real results after only a few weeks. Just in terms of feeling better, more centered, less foggy, more awake in the morning.

And this, after a prolonged period of sedentary isolating.

Oh, sure, I was active as a kid (and clumsy and prone to falling and hitting my head, unfortunately), and I went through periods of working out regularly and getting regular exercise as an adult, but after my last fall in 2004, the whole exercise thing went right out the window. It was bad. I went from being a regular at the gym to not even being able to set foot in the building, because I was having so much trouble understanding what people were saying to me — it totally freaked me out.

That freaking out was a problem. It was a problem at work and at home. It was a problem when I was with people or alone. My sympathetic nervous system was whacked and everything I encountered that was new or unfamiliar felt like a life-and-death threat, which had me pumped up on adrenaline all the time. I was a mess to live with. I had fallen, and I couldn’t seem to get back up.

I became intensely inactive. I stopped mowing the lawn and taking care of the plantings around the house. I stopped clearing leaves when they fell. I stopped sweeping the driveway. I stopped fixing things around the house when they were broken. I stopped going for the walks that I’d loved to go on for as long as I could remember. I stopped talking to people. I stopped talking to my spouse. I just stopped. Everything I encountered felt like a monstrous threat — one to be fought to the death or fled from in terror.

God, how miserable that was! The wild thing is, I didn’t even realize how whacked I was. All my alarm felt 100% justified. I felt absolutely positively certain that every novel situation I encountered was indeed a threat to my safety and sanity. I was going rapidly downhill, and I wasn’t going down alone. I hate to say it, but my spouse’s health declined rapidly as my own TBI issues escalated.

So, what got me out of that? Realizing, for one, that I was in danger of being put on meds for my attentional issues. My PCP had mentioned the possibility of putting me on something for my distractability, and my neuropsych had started mentioning the different medication options available. Talk about freaking me out. I had been on some heavy-duty meds for pain, back about 20 years ago, and they totally screwed me up. To the point of partly disabling me. What’s more, the thought of having someone else control my biochemistry — whether a pharma company or my neuropsych or my doctor (none of whom have to live in my body and brain, and none of whom are instantly available to me, should I get into trouble) — freaked me out enough to get me to sit up and pay attention and try to find some other way to wake myself up in the morning.

I had been trying for some time to figure out how to get exercise into my life, as I watched my weight increase and my strength decrease. I just didn’t have the intensity of focus required to figure out how.

When the docs started talking meds, I found my focus real quick.

The rest, as they say, is history. My life has done a 180-degree turn, and my mind and body and brain are doing better than ever. My neuropsych kind of looks at me oddly when I rave about how awesome exercise is, but theyr’e not living in my body and dealing with my brain, so how would they know what a qualitative difference it’s made? My PCP, thank heavens, is no longer talking about meds, and my level of functioning is on a whole new plane.

All this, I believe, because I have a solid physiological foundation. I’m exercising all my brains — in my skull, my heart, and my gut — and exercise helps them all communicate better with one another. My anxiety experience is now such that I can delay the knee-jerk reactions that plagued me for so many years. And I can stop to ask myself what’s going on, before I get carried away by my impulse to flip out.

It’s that effective and that powerful. And it’s so simple to do. Exercise. Take the stairs. Walk briskly instead of ambling along. Park at the other end of the parking lot and hot-foot it to the front door of the store — even in the rain. Get out for a walk on the weekends. And make a point of doing some light calisthenics before you get into your day. It can make a difference. It will make difference. The attention you pay to this will give back to you, over and over and over again.

As Nike says, “Just do it.” Your mind will thank your body for helping your brain.

What’s your mission?

Source: Aaron Escobar (the spaniard)

Disclaimer: This may turn out to be a clumsy post. I don’t want to insult anyone with any inappropriate references or seeming to make light of or diminish anyone’s career or calling or history of service. If I get clumsy with my terminology and come across sounding like an idiot, please accept my apologies. But I think what I’m about to say is important, so I’m going to take a shot.

I’ve been thinking a lot about what I’ve read about the movie Restrepo, a feature-length documentary that chronicles the deployment of a platoon of US soldiers in Afghanistans Korengal Valley. I’ve been thinking about one brief scene that someone described — a soldier being asked what he was going to do when he gets home and doesn’t have the constant adrenaline rush of war anymore.

He said, “I don’t know.”

See, this is the thing — with soldiers returning from the front, as well as TBI survivors who once lived fast-paced, action-packed lives. Logistically and qualitatively, there’s really no comparison between the constant life-and-death struggles of active-duty soldiers and, say, an acqusitions and mergers attorney. But biochemically, they’re much more similar to each other than to folk who aren’t bathed in a daily biochemical wash of super-amped-up stress hormones.

When you get bumped out of the front, thanks to TBI (or PTSD), what do you do?

We don’t know.

When it comes to addressing the issues of TBI/PTSD survivors who come from prolonged exposure to biochemical fight-flight extremes — especially when that exposure was in service to a larger-than-life, well-defined structure (in the case of m&a attorneys, the firm(s) handling the transactions and the rules of the game played… in the case of soldiers, the military culture and the rules of engagement). You have a very well-defined structure around you, you’re bound by that structure to follow certain rules, and the structure also defines for you what it is you’re supposed to do within very well-established parameters. And within those parameters, you participate in some of the most taxing and harrowing experiences the human system can endure. The structure, the order, the machine… it all makes it possible for you to do more than you ever dreamed you could — both for good and for ill.

It’s the highest of the highs. It’s the lowest of the lows. And over time, if your system is exposed to enough of those fluctuations without a chance to balance it out — the parasympathetic (rest and digest) nervous system gets out of practice, since it’s constantly pushed out of the way by the sympathetic (fight-flight-fake-it) nervous system — you get stuck in gear. Like the cable of your clutch goes on you when you’re in the fast lane hauling ass out of Los Angeles.

And then you get hurt. Or you get sent home. Or your tour ends.

And then what?

You get out of the hospital/rehab. You try to settle in at home. You look for something to fill the void left by the absence of your colleagues or comrades in arms. Everyone is telling you, “Relax… Take it easy… Calm down…” But the very things that kept you going all those months/years, the very things that made you who and what you ARE… well, they’re gone.

And how does a ghost relax? How does a shadow take it easy? How does a shell calm down?

Getting injured, getting hurt, getting fired/discharged… There’s more to it than just losing your place in the rank and file. You actually lose yourself. Who are you, if you aren’t doing the things you’ve strived to do, month after month, year after year? Who are you, if you don’t have that structure to work in, the rules to define you, the culture to tell you you’re needed?

This, to me, is the most debilitating aspect of TBI — and probably PTSD, too. It’s not just some hurt that needs to be healed or some biochemical imbalance that needs to be righted. It’s a crushing, diminishing, awful loss of the very essence of who you’ve become. And the rest of the “civilian” world — unless they’ve been in that life — cannot possibly understand how insulting it is when they tell you to relax, calm down, take it easy.

Who you are and what you are is about doing and being the exact opposite. Because that’s what you do. You don’t relax. You don’t calm down and mellow out. You don’t take it easy. Because you have a job to do. You have a mission to accomplish. And because you are who you are, you cannot and will not rest, till you finish the job.

So there.

Some of us need missions. We need a structure, a higher purpose, a job to do. We need someone to tell us This Is The Priority, so we can pitch in and do our part. We need to be part of something bigger (and badder) than ourselves, and lose ourselves in service. Some of us are not part of the cult of personality, but part of the brother-/sister-hood of service, whose very essence is refined and shaped by our selfless dedication to the Higher Good. We dedicate our lives and our whole selves to duty and to making a difference in the world — not for the sake of our own glory, but because that’s who we are.

And we need a mission.

Coming home — whether from the front or the hospital — or getting up after a fall, climbing out of a wrecked car, or waking up after being knocked out, we are not the same people as we were before the events that re-shaped our lives. But we still need direction and purpose. In the absence of the larger structures (which no longer have need of our broken selves), it’s up to us to find in ourselves where we want to serve, how we wish to contribute. I firmly believe that each and every one of us, no matter how damaged, has a role to play and a place to fill. If we haven’t got the coordination or the cognitive ability we had before, there are other ways we can pitch in and help out. If we haven’t got the old skills we once had, we have the ability to develop new ones, perhaps ones we never thought we’d have/need.

Once injured, once hurt, once damaged by the world we once participated so fully in, it can be all too easy to get lost in the shuffle.

But if we step up, we can make a fresh start, with a new mission, with a new way, a new dedication. We may not have the old structures around us, but we can find and/or create new ones. This is something we can do.

For some of  us, it’s something we have to do.

What’s your mission?

Stop saying PTSD (and TBI) is incurable

I came across a great post by Belleruth Naparstek over at Huffington Post about how well-intentioned professionals are running around saying that PTSD is incurable — an intractable condition.

Huh. How about that. Sounds to me like we’re all screwed, because a ton of people have PTSD, and it affects their families and friends and coworkers, and if it’s an intractable, incurable condition, we’re all stuck dealing with it for all time.

Which doesn’t sound right to me.

So, I’m glad Belleruth is talking about non-standard ways of dealing with it. And I have to think, also, about how I employ similar techniques to deal with the stresses of my TBI-related difficulties.

I strongly recommend the article. And the piece I’m taking away is:

[There are] consistent threads running through these approaches:
1. They first and foremost find ways to re-regulate the nervous system.
2. They destigmatize and normalize the experience by explaining PTS as the somatic and neurophysiologic condition it is.
3. They offer simple, self-administer-able tools that empower the end-user and confer a sense of mastery and control.
4. The interventions are cast as training in skill sets, not the healing of pathology.

They treat PTSD as a physical condition, first, and they teach people how to deal with that aspect of their lives.

I have found, in my own dealings with TBI-related stress, that this same kind of orientation helps a whole lot. I have to take seriously the physiological aspects of my condition, which tweak the psychological parts of me. And when I approach the situation with a physical orientation, the results really are like magic.

Except they’re not magic — they’re physiology. Which well-trained psychological professionals miss, because it all happens in realm of  a “frozen, primitive, pre-language experience – sensation, perception, emotion, images and motor reactivity – in the survival-based structures of the brain.”

I wonder… if people treated the stresses of TBI the same way that they treat the stresses of combat and other traumas, with this non-standard, non-talk-therapy approach, how much of a difference would it make? If I’m any indicator, that would be a whole lot of difference.