Giving hope its due

Okay, now that I’ve riffed on despair, it’s time to dwell on hope. And healing. And the good things that come along with brian injury.

I can almost hear you thinking, “What good things that come along with brain injury? What are you – nuts? Head trauma sucks, and long-term after effects of even a mild brain injury can be so debilitating as to ruin lives, destroy families, trash careers… and more.”

I agree. Brain injury is a national health crisis and it’s a tragedy and a disgrace that something so common (see the stats in the sidebar) is so little understood and its impact so under-estimated. It’s a travesty, in fact. Last night, I was reading the book Confronting Traumatic Brain Injury by William Winslade. The Amazon review says

Author William J. Winslade suffered from a traumatic brain injury (TBI) as a 2-year-old, when he fell from his second-story porch and landed straight on his head. He’s one of the lucky ones who’s recovered fully, both physically and emotionally; his only souvenirs of the fall are a three-inch scar and a dent in his skull. He warns that of the 2 million Americans who suffer from TBI each year (most of them from car and motorcycle accidents), up to 100,000 of them will die prematurely. More than 90,000 of them will face up to a decade of extensive rehabilitation, at a cost of up to $4 million each. Even a TBI as seemingly minor as a concussion can have devastating long-term physical consequences, causing seizures, memory loss, learning disabilities, and more. However sorry these problems may be, he writes, “the truly debilitating deficits” are the less-obvious emotional effects, “such as social isolation, [which] take their own insidious toll.”

Which is all very true. I can personally attest to it. And that book is ten years old. So why don’t more people know about this stuff? Why is our country — and the world — still forced to cope with so much trouble relating to brain injury. From violent crime to domestic abuse, from learning disabilities to physical limitations, to series of progressively more debilitating re-injuries over the course of lifetimes, brain injury plays a whole lot of havoc with our world.

The thing is — and I’ve read pieces by Dabrowskian therapists saying this is why they became interested in his work — the information we have (and we do have plenty of stats about TBI) isn’t always conducive to knowledge.  Perfectly intelligent people with lots and lost of information at their fingertips continue to overlook and ignore or downplay the impact of head injuries, and refuse to take steps to prevent it. What’s (perhaps) worse, is that perfectly intelligent people, who are capable of understanding the objective impact of head injury, persist in treating TBI survivors as though there’s something wrong with them, that they’re deliberately doing the things they do, that they’re intentionally screwing up, that they’re cheating the system, slacking, taking advantage, and doing any number of other things to “milk” a supposed injury.

Check the blogs of TBI survivors out there, and you’ll find more than a few accounts of difficulties with friends and loved-ones who refuse to factor in brain injury in the TBI survivor’s behavior.

Now, I could circle back around and delve into despair, but I’m choosing a different tack. Why do intelligent people neglect taking the facts about TBI into consideration? Why? I suspect it’s because brain injury isn’t just about facts. It’s about harm done to the singlemost important organ in the body. It’s important not just because nothing works without the brain, but because even if it is functioning somewhat well in a physical sense, if it’s not operating at peak performance, it deprives us of something even more vital to the human soul than motor function or control of our bodily functions — it deprives us of our humanity.

Truly, brain injury is terrifying for most people, because it hits us where we live, in the deepest, darkest part of our souls, where we are most vulnerable. Especially, I think, for intelligent, intellectual, fact-driven people, the emotional impact of brain injury — just contemplating it, to begin with — can be so unsettling that it causes higher reasoning and analytic function to slow, if not stop. Pondering the impact that head trauma can have is, well, traumatic. It kicks off our most basic survival responses. And our fight-flight-freeze response tends to make us abandon high reasoning for the sake of just getting away from the thing that threatens — or just frightens — us.

I suspect that this, more than anything, is what keeps brain injury from being adequately apprised and addressed in this country. And it appears that the only thing that will make us sit up and take notice are tens of thousands of returning veterans — trained warriors, wounded warriors — who are reintegrating into a society that is woefully unprepared for them… but will need to change that, if we’re going to get by in this new century, this dawning millenium.

And that’s where I think hope can help.

Certainly, hope is necessary in any tough situation, but especially in the case of TBI. Mild, moderate or severe, brain injuries certainly leave a mark on survivors and their family, friends, co-workers… often without them understanding why and/or to what extent. But we don’t have to let that keep us down. Yes, there are problems. Yes, there are issues. Yes, there are tremendous difficulties. But with the brain, you never know what’s going to happen next. Some recoveries last months, years, decades longer than anyone expected them to. But abilities can sometimes be restored, where the experts were sure they were gone for good. And where some abilities are lost for good, others can arise in their place — or show up where they weren’t before. Plenty of people have survived trauma that marked them “certainly” for death, and they’ve battled back from the brink. And I’ve heard stories of people who sustained significant brain trauma, only to find that suddenly they could paint like nobody’s business. Or they started writing one day for no apparent reason.

Looking at some of the most brilliant minds of the past thousand years, the brains inside their heads have not always been “standard issue”. Einstein was missing part of his brain. I’ve also heard that Thomas Edison’s brain was malformed. (Note: I’ll have to do more research that one — I’m not finding information about it right away.) Gifted artists and writers have been epileptic, as have some of our most effective leaders and gifted actors and athletes.

And I suspect, the more we learn about brain injury, the less afraid of it we’ll be. The more we realize that it is NOT a death sentence, that it is surivivable, that it can actually impart or uncover abilities and gifts that might otherwise go unnoticed and undeveloped, the less traumatic the mere consideration of it will be. I don’t mean to diminish the suffering of those who have really struggled with the after-effects. And I don’t want to downplay the seriousness of it. I’m just saying, there are two sides to this story — the tragedy and the triumph. And when we can pay as much attention to the triumph as we do the tragedy, and accept them both as possibilities… as parts of the whole of human experience, we might stand a better chance of confronting the challenges that go along with brain injury, and learn to integrate the experience into our collective storehouse of information… and for once, let facts — not fear — govern our understanding of the injured brain.

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Yes, I do have problems with getting mired in details…

From March, 2009 – I may have never actually published this…

I’ve been meaning to finish up my writing on “A Perilous Relief“, which is about how I use stress to relieve certain kinds of distress in my life, and how that works against me.

But then I got caught up in thinking about how TBI and PTSD intersect and feed each other. And then I got caught up in thinking about Tetris and how it might help relieve PTSD flashbacks. And then I got caught up in thinking about Natasha Richardson. And then I got caught up in thinking about my job situation. And then…

All of these are very interesting things to think about, and some of them (like job stuff) are quite valuable, if not essential. But in the process of researching the different pieces of these puzzles, I went down a bunch of rabbit holes.

What's been keeping me busy for the past while
What’s been keeping me busy for the past weeks and months

And the paths that used to be pretty straightforward and simple, have now gotten tangled and twisty and have intersected with other paths, so I’ve been wandering around this veritable “rabbit warren” of interests and — let’s face it — distractions.

It’s all very important to me, of course, but these different ideas have been competing for time and attention, and there’s really only so much I can do in any given day. I need to keep my household running, I need to do my taxes, I need to keep current at work, and I need to make sure I’m getting enough sleep each night and I’m eating well.

I need to square away some very basic needs which are not nearly as dramatic and entertaining as exploring my MRI in 3D, but which are essential to my daily functioning. And those things are getting lost in the shuffle. Kind of like “A Perilous Relief” has gotten back-burnered numerous times, since I started working on it a few months back. I know I need to mind my sleeping patterns. I know I need to take my vitamins regularly. I know I need to cut out munching on junk food at 3 p.m. each day (it’s making my tongue break out, in addition to making me feel bad generally). I know I need to help with cooking and cleaning and shopping and yard work. But I get so caught up in other things that I overlook them and don’t tend to them. And things start to fall apart around me.

Which isn’t so bad, when you’re cognitively fully-abled. But when you’ve got cognitive deficits and you’re susceptible to paralyzing anxiety and overwhelm, something as simple as a messy desk can throw off your entire day. And not being able to find papers I need in the construction disaster area of my office sends me into a tailspin that triggers my hot temper and makes me miserable to live with.

I really do need to tend to the basics. But I hate having to tend to the basics. I’ve never been good at it, and I feel it’s terribly unfair of the universe to force me to pay attention to that kind of stuff. For most of my life, I’ve been able to function well in the midst of mess and chaos. No more. Not in the past few years, since my fall in 2004.

I think this is probably the most frustrating part of TBI — not being able to take for granted the things I always did before. Like sleeping through the night. Like keeping my cool in tough situations. Like remembering whether or not I shampooed my hair in the shower, five minutes ago. Like understanding and remembering what was just said to me. I have to expend so much friggin’ energy just keeping up with stuff that everybody else seems to have no problem with — and the everybody else assumes I can do just fine — that it gets depressing, and I lose interest in it pretty quickly. It’s tough to sustain invested interest in stuff that you keep getting wrong, over and over and over again, till you spend much of your time demoralized over the littlest things. There’s only so much failure at fundamentals I can take, before I back away from my problems and avoid them entirely.

So, I end up neglecting things I should take care of — like my sleep schedule. Like my temper. Like my personal hygiene. Like asking for clarification while I’m talking to someone about something important. Granted, I’m not an exhausted, explosive, unkept, smelly one-sided conversationalist. But I could go there all too easily, if I didn’t keep track of where I’m at… and if I didn’t realize that I have these (and many other) issues.

When I slow down long enough to examine my life, I can see plain as day that all is not 100% perfecto in my life. I have many areas where I need help, and I get that. Finally, I get that. Having my neuropsych evaluation turn up hard data about me being really distractable, having a hard time with sustained attention, being prone to missing important pieces of information that are said to me, and having a Swiss cheese working memory that drops information (literally) in the space of a few seconds, has brought it home, loud and clear, that I can’t do this all by myself.  I am in fact impaired. I need help, God help me.

So, I’m now starting to find folks to help me with those things. My neuropsychologist has started to help already. And my new therapist, who has a neuropsychological background, has already helped with some communication issues. I’m also getting to a point where I’ll reach out to a speech pathologist to help me with my verbal comprehension and processing. It’s all coming together. With the help of others.

But for now, I need to tend to basics… finish my breakfast, take my shower (and shampoo my hair), dress for work, and go earn my pay. It’s not the most exciting prospect in the world, but it’s all got to get done.

I love my therapist, but…

If they keep hinting around at me being “ADD” one more time, I’m not sure what I’m going to do. Granted, I have documented attentional difficulties. Granted, I do tend to exhibit plenty of symptoms consistent with attentional challenges. But as useful as ADD may be to them, to understand where I am and how I am, there’s something about that diagnosis that feels very incomplete. Not to mention over-simplified.

I’ve been thinking a lot about diagnosis, over the past months. The past year, in fact, as I’ve been in therapy each week and I’ve been on my quest for adequate diagnosis and neuropsychological testing. I frankly cannot wait to hear what people think is really going on with me… expert people, professional people, people with objective metrics to drop me into some category or another.

It’s not that I want to be categorized, in order to understand and value myself. No way. Diagnoses tend to be too broad and over-simplistic, to do me much good, past a certain point. A diagnosis from others is not going to define me as who and what I am, on the inside. But an official diagnosis will enable me to express to others that there is something verifiably “other” about me. I’ll have a word — or words — to give people a short-hand clue about who I am and what challenges I have to deal with on a daily basis. And I might be able to explain my differences to others a little better, if we have a common diagnostic vernacular, as it were.

I just need a commonly agreed-upon vocabulary, in order to talk to others about my situation in a way that they can grasp. If I explain it to them, I’ll fall flat. I know that from experience. The depth and breadth of my difficulties don’t translate well into everyday language, and given my successful coping strategies, who the hell would believe me, anyway? I make it my business to conceal my difficulties. So, I’m in a bind, when I need to admit to them.

But back to my therapist and their love of the ADD diagnosis. They’ve been hinting at it since I started seeing them close to two years ago. They live with someone who is extremely ADD, and they know from personal experience what it’s like to deal with it on a daily basis. The thing is, I’ve met their significant other, and it seemed to me that they had a whole lot more neurological issues going on, than “just” ADD. But how do you tell this to a person who’s invested the past 10+ years of their life relating to someone on the basis of ADD, and doesn’t seem open to other explanations?

Easy… I don’t.

Anyway, I’m looking forward to getting the full report from my neuropsych about what the heck is going on with me, how it impacts me, and what I can possibly do about it. Could be that I need to be on a drug of some kind. Could be that there are other physiological issues I need to address. Or there could be other neurological issues I have to deal with — more testing is coming up later this month, which ironically, I’m really looking forward to.

In order to deal effectively with my therapist, I need to have some sort of “ammunition” in hand about my objectively measured state. Then — and only then — will I feel like I am on solid footing in dealing with their suppositions about my attentional difficulties.