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.

Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

8 thoughts on “Giving hope its due”

  1. Hi there,

    Stumbled on your blog a few months ago – a great relief as I’ve had about a decade of what you describe in your own life, a series of head injuries whose aftereffects have been both MILD and TRAUMATIC – ie more or less invisible from the outside, but incrementally and steadily debilitating. After nine years of mostly self rehabilitation, I popped out of the fog last summer and have been trying to sort out my life – and scrambled brain – ever since.

    The worst thing that still afflicts me is this persistent fatigue, which in turn brings back the fog and everything that goes with the fog – loss of concentration, insomnia, irritability, depression and memory lapses – a sort of distracted numbness. I’ve been taking gingko and fish oil (omega 3’s) and find these both strengthen brain functioning to a great degree, but I wondered if you knew of anything else that helps with memory, concentration, general brain function.

    Also, re: your last post and the brain’s ability to heal itself, even generate new abilities (I have had this experience myself, albeit on a minor level – I became much more visually orientated a couple of years after my injury), have your read or heard about Norman Doidge’s ‘The Brain That Can Change Itself’? Curiously, he barely mentions head injuries, but he talks a lot about the brain’s ability to heal itself by finding new pathways – how the brain learns how to relearn.

    Which is great, but I’m still so flippin’ tired most of the time . . .

    Keep up the good work.

    Cos

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  2. Hey Cos –

    Thanks for writing. I hear you about the fatigue business. It just drives me nuts, at times. The more tired I get, the harder it can be for me to relax and sleep. Vicious cycle — in German, they call it a “Teufelskreis” — literally, a devil’s circle. I second that.

    My neuropsychologist tells me that fatigue makes everything worse, and that it’s important to be careful about what I use to deal with it. I have used Benadryl in the past to help myself sleep, but it doesn’t metabolize very quickly, and I find myself feeling it well into the next day, even if I take it at night. I’m told that any kind of sedative medication can make my attentional issues worse, which screws with my working memory and makes me even more prone to screw up than I already am — as though I need more help with that! 😉

    Also, my neurpsych tells me that computer screens generate the kind of light that our brains think is daylight, so when we’re sitting in front of the computer at night, our brains think they need to wake up, which throws off our sleep/waking rhythms. I’m told I need to get off the computer no less than 2 hours before going to bed. I’m usually good about that, but it’s something to keep in mind.

    I try progressive relaxation and deep breathing, as well as taking a long, hot shower before going to bed. I also cut back on caffeine and try to not drink anything less than 2 hours before I go to sleep — so I don’t wake up to go to the bathroom.

    I also find fish oils helpful. For general brain function, I keep getting the message from different people that exercise is very beneficial on all counts. For memory and concentration, I have some strategies I’ll be sharing in the coming days. I’ve come up with some tactics and strategies that work well for me — provided I’m rested, of course 😉

    And yes, I am a huge fan of Norman Doidge’s book — in fact, it was one of the things that made it “safe” for me to fully confront my TBI issues — knowing that the brain can actually recover was essential for me. It told me that even if I did have problems, I didn’t need to give up on my brain. Other people had overcome tremendous difficulty and challenges and had made it through…. so logically speaking, why couldn’t I?

    Such an important message — that the injured brain can (and often does) heal and adjust and develop.

    I hope you can manage to get some rest. I’ll be posting soon about how I deal with sleep and fatigue issues.

    Be well

    BB

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  3. Meditation is a big plus – hard to get yourself into the routine pattern – when i do it regularly it makes a difference but then I get lazy about it. Look into a mindfulness stress reduction program. It’s your brain that needs to rest – so meditation gives it a break without putting your body to sleep (usually) – if you keep putting your body to sleep or using meds you fog up your brain or end up with excess energy that makes it hard to focus – and creates stress.

    A good rehab program can also help – because if you are managing your life better you will have better and more level energy

    All the obvious stuff applies – get exercise – and try not to think while you are exercising. It doesn’t have to be super killer stuff – just activity. Helps you sleep better – getting good nights sleep is very very important. Accept that you may need more sleep now. It just is.

    The stuff about computer screens etc may be true too – we tend to throw ourselves out of whack with stuff and expect a resilience that doesn’t work the same.

    Take breaks – thinking breaks, 1 minute of focused breathing. Or mindfulness practice.

    Try to note if there are particular activities done at certain times that may be more draining and switch them around. (ie I cannot run at night and do anything cognitive afterward – it’s zone out time)

    Keep to a schedule

    Monitor caffeine – believe it or not caffeine I have been told can be the devils brew and I live for the stuff because I swear it gives me focus. I have not conquered this but my rehab team have told me to cut it down. It makes cognitive processing harder, sleep harder, and has a high cost associated with it. I don’t know the answer to this.
    Alcohol of course is going to drain you.

    I also find that I crave sugar a lot when I am tired – but it ends up costing me.

    Good planning helps – sometimes

    Being happy

    Naps, if you can manage them – forgiive yourself for a nap – make it short but sweet.

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  4. BB (and M),

    Thanks for the tips. I appreciate your comments about computer screens – TV I find just as bad – sometimes when i can’t sleep I zone out surfing the net – it can have a hypnotizing effect that soothes the brain in those over-fatigued, over-excited times – but I’m realizing it just makes everything worse the next day . . . until relatively recently, I couldn’t even spend much time on a computer, the light on the screen would leave me too disorientated, and bring on that terrible overwhelmed feeling … .

    I was into meditation before my last injury and saw great benefits. However, I found after I was injured, the fog nullified it – of course I could close my eyes, count to four etc, but couldn’t get past the fog into any meaningful place. Recently, I’ve been trying it again, with mixed results. One thing I found that did help was yoga – something about the physical movement, being centered in the body, attuning movement with breath, could be very helpful in clearing out the fog, and tension in the limbs. I think any meditative, movement-based discipline would help – Tai Chi, Qui Gong, etc.

    The one medication I’ll take is Advil, which I find works, albeit on a very limited level, calming the mind and the nerves. Benadryl is too strong for me . ..

    Naps are great, totally beneficial. I wake up a little groggy sometimes, but can often focus much better afterwards . . .

    As I wrote, the fatigue still lingers, though nowhere near as bad as it used to be. I think, BB, that Doidge mentions how long the process of the brain finding new channels can take, and I wonder if the fatigue isn’t part of that – the brains struggle to cut new channels. I wonder too if you and others experience what I do when the fatigue becomes too much – not just being overwhelmed, but actually over-excited, impulsive, as if the brain was misfiring. When I get REALLY tired (and no one who hasn’t experience this fatigue I don’t think can really understand what it’s like), my head feels like it’s full of static and my nerves actually start to seize up, like my brain is developing gridlock. It’s a weird feeling, like my limbs start feeling like blocks of wood, and once I reach that point, it can take days for my nerves to unravel. Sometimes it would get so bad, I would have to lie in bed, with all the lights off, and no sound, and wait for this feeling to pass. On these occasions, it felt like a minor seizure and, afterwards, I’d always feel a little spaced out for a couple of days. . . .

    So I wonder how general this experience is. As I said in my first post, i’ve mostly gone through this experience alone and man, it’s been a long, long haul . ..

    Looking forward to your next post.

    City of strangers . . (Cos)

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  5. Hey Cos –

    I hear you about the meditation bit. I used to meditate, myself, on a regular basis, but since my latest fall, I just haven’t been able to settle my mind enough to “get there” anymore.

    My neuropsych has talked about how a brain can become “restless” after TBI — I suspect you’re onto something with the extra work that’s required for creating new channels, where old ones are damaged. It would certainly explain the fatigue, which is so intense sometimes, I just give up trying to catch up and hunker down and go about my business as best I can. Sometimes, I just can’t worry about being tired. There’s nothing to do, but just BE tired, until I can block off some time to rest… which has been somewhat rare, lately.

    That seizing up that you describe happens to me, too. And it might be form of seizure, tho’ I’m not qualified to say, one way or the other. I have had an EEG to see what that kind of experience might mean with me, but aside from some rare theta slowing in one of my anterior temporal lobes, nothing abnormal came up. But EEGs are notoriously unreliable in detecting seizures, so I’m not sure how it all fits in.

    I do the same thing you do when it all gets to be too much — take to the bed with all the curtains drawn and things very, very quiet. Sadly, I’m not always able to remove myself from polite company before I’ve melted down around my family members. I wish they could understand what it’s like to be so tired, and so unable to “catch up”.

    And yes, I do have that same kind of experience — when I’m overwhelmed and overtired, parts of me actually speed up and kick into high gear… getting over-excited, as you say, impulsive, rash… I can usually tell I’m over-tired, when I start checking lots of books out of the library and making long lists of things I “must” do. I actually ramp up, before I wind down… going to high extremes before hitting low ones.

    I am gearing up to start some yoga soon. I’m hoping the movement helps me. Getting my body involved in meditation usually does.

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  6. I used to call that experience ‘letting the bees out’ – as in letting the bees out of the aviary so that they buzzed around my head – I couldn’t focus because of the ‘noise’ but I didn’t really want to sleep, I wanted to rest my thoughts. So I would have restless energy to do something but hard to find something that is non-cognitive. If you can run or swim that helps.

    I think yoga might be a good thing, I have to try it. The idea is to do something but not thinking efforts. I HATE the fatigue – but it does get better over time. I do love coffee but as I mentioned elsewhere I have been warned that it can jazz me up and I go past focus into restless.

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  7. AS A TBI SURVIVOR OF 5 YRS., I CAN RELATE TO ALL THAT YOU HAVE WRITTEN. “MILD” TBI , WHAT A JOKE! NO ONE CAN FULLY UNDERSTAND WHAT WE GO THROUGH. ESPECIALLY THE DOCTORS.

    KEEP WRITING FOR ALL OF US OUT HERE. IT IS SO ENCOURAGING & HELPS US KEEP MOVING FORWARD WITH OUR LIVES.
    IT IS SO GOOD TO KNOW THAT THERE ARE PEOPLE OUT THERE THAT UNDERSTAND & KNOW EXACTLY WHAT WE ARE GOING THROUGH.

    THANK YOU SO MUCH

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