A new focus for this blog

I’ve been keeping this blog for about a year and a half, posting pretty frequently, and getting a lot of visitors — over 35,000 readers, total.

Lately, I’ve been dealing with some sticky medical issues that have baffled and confounded me for years, and that I haven’t yet been able to solve, medically. I had a pretty amazing turn of events yesterday, when someone finally said, “It doesn’t sound like _________. That just isn’t consistent with what I’ve seen.  It sounds a lot more like ____________.”

In the space of an hour, I went from possibly having a serious, potentially life-threatening condition that people had been thinking I had, to probably having a less serious and not-life-threatening condition that people had wondered about, but nobody had followed-up on. This, at last, because a highly qualified, personally invested professional actually took the time to talk to me and listen to me for more than 20 minutes… and had taken the time to actually get to know me and my life history (not just my medical records), and used their head, rather than some generic algorithm that is designed for multiple scenarios.

The process has actually been longer than the hour we spent yesterday. We’ve actually been in contact for about a year. And that’s how long it took for me to develop a relationship with a care provider and health advisor who could actually help me.

This is good. It took forever, but it’s worth the wait.

Now I can get on with learning about this other thing I’ve got going on with me.

That being said, I’m going to be shifting the focus of this blog away from myself. A lot of people have visited and read and commented, and I appreciate the feedback. But life is waiting for me to live it, and I just don’t have the time, anymore, to keep up with posting here. I haven’t been all that keen about the quality of my posts, anyway…

The thing about social media is that you have to be consistently social, and if you’re not, you might as well not even bother. So I’m saving us all the trouble of humoring my inconsistencies, and I’m stepping way.

Who knows what the future will bring for this blog? I have learned a lot, but it’s time to shift my focus towards other things. Like living my life. And doing more writing that’s got more depth and substance to it. It could be that I come back, now and then. But then again, I may not.

Only time will tell…

Brain Is a Co-Conspirator in a Vicious Stress Loop

Great article at the New York Times

If after a few months’ exposure to our David Lynch economy, in which housing markets spontaneously combust, coworkers mysteriously disappear and the stifled moans of dying 401(k) plans can be heard through the floorboards, you have the awful sensation that your body’s stress response has taken on a self-replicating and ultimately self-defeating life of its own, congratulations. You are very perceptive. It has.

As though it weren’t bad enough that chronic stress has been shown to raise blood pressure, stiffen arteries, suppress the immune system, heighten the risk of diabetes, depression and Alzheimer’s disease and make one a very undesirable dinner companion, now researchers have discovered that the sensation of being highly stressed can rewire the brain in ways that promote its sinister persistence.

Reporting earlier this summer in the journal Science, Nuno Sousa of the Life and Health Sciences Research Institute at the University of Minho in Portugal and his colleagues described experiments in which chronically stressed rats lost their elastic rat cunning and instead fell back on familiar routines and rote responses, like compulsively pressing a bar for food pellets they had no intention of eating.

Moreover, the rats’ behavioral perturbations were reflected by a pair of complementary changes in their underlying neural circuitry. On the one hand, regions of the brain associated with executive decision-making and goal-directed behaviors had shriveled, while, conversely, brain sectors linked to habit formation had bloomed.

In other words, the rodents were now cognitively predisposed to keep doing the same things over and over, to run laps in the same dead-ended rat race rather than seek a pipeline to greener sewers. “Behaviors become habitual faster in stressed animals than in the controls, and worse, the stressed animals can’t shift back to goal-directed behaviors when that would be the better approach,” Dr. Sousa said. “I call this a vicious circle.”

Keep reading…

Oh, the uncertainty…

I came across this quote today:

“You see, one thing is, I can live with doubt and uncertainty and not knowing. I think it is much more interesting to live not knowing than to have answers which might be wrong. I have approximate answers and possible beliefs and different degrees of certainty about different things, but I’m not absolutely sure of anything and there are many things I don’t know anything about, such as whether it means anything to ask why we’re here …. I don’t have to know an answer. I don’t feel frightened by not knowing things, by being lost in a mysterious universe without any purpose, which is the way it really is as far as I can tell. It doesn’t frighten me.”

- Richard Feynman

Well said, Mr. Feynman. I, too, can live with doubt and  uncertainty. If nothing else, there’s only one thing I actually can be certain of — that along the way, there will be plenty of doubt and uncertainty. Then again, maybe there won’t be ;) And the idea of “being lost a mysterious universe without any purpose”… well, that’s not unfamiliar to me.

I’ve been having a bit of existential angst, lately, and it seems to me that, rather than having the universe (or even our lives) “pre-loaded” with purpose, it’s our job to provide the purpose on our own. Free will and all that. Seems to me, that if someone or something else is supplying the purpose for us — and it’s just our job to live up to it — then it really cuts back on the amount of self-determination, even free will, that we have to exercise. Personally, I’d rather come up with the purpose on my own.

Anyway, I had an interesting discussion with someone close to me, a few months back. We were talking about faith and religion and what religious orientation we were. I said that I believe a lot of things, but I just believe them — I don’t pretend to know them for sure. And ultimately, I had to say, I really am an agnostic. It’s not that I don’t hold to any creeds or tenets — I do. I’m just all too aware that I could be wrong.

It really bothered the person I was talking to. They’re the kind of person who needs a lot of certainty in their life. They require it, in fact. I guess they grew up in a very uncertain environment, where their parents’ unpredictability was literally life-threatening for them, at times. I think that’s shaded their view of life a lot.

Well, I had a very uncertain childhood, too, but most of the life-threatening uncertainty took place outside my home. Inside, there was plenty of pain and struggle, but I can’t say that it was life-threatening… Maybe that’s saved me.

Anyway, yes, I am very comfortable with not knowing a lot of things. Knowing them, in fact, would probably depress the crap out of me, because the mystery would be gone, and for me, mystery is the nectar of life. It sweetens the experience and gives me something to look forward to discovering. Doubt, too, is an essential part of my life, for it keeps me honest and keeps me paying attention.

It’s the absence of certainty that makes things the most interesting for me. The utter, total lack of surety that I feel whenever I approach science or medicine or philosophy or religion, is what entices me to come closer… They seem (to me) to be disciplines pursued by individuals passionately dedicated to infusing life with certainty, yet at their very core, they do exactly the opposite, constantly evolving and turning over their own “proven” tenets, when they are at their most honest.

That contradiction, the overturning of “certainties” and the tearing-down of prior assumptions is where things get the most interesting for me. And the folks who dedicate their lives to the uncertain science of self-challenging discovery really comfort me with their openness. At the same time, the folks who ply their scientific and medical and religious trades with an air of absolute certainty strike me as being the least reassuring, especially when they sit across from me behind their big wooden desks and proclaim “beyond a shadow of a doubt” that such-and-such a diagnosis or prognosis IS SO.

It’s a problem, that discomfort with absolute “certainty”. For my doctors, and for me. They’re trying so hard to convince me that they know what they’re doing, and the harder they try, the less I believe them, because they seem so unwilling to leave room for error. Or maybe that’s required by their malpractice policies. Who can say?

The more I think about it, the more I realize that this doubt of mine, this comfortability with doubt and uncertainty, and my willingness to entertain different approaches and different positions and different “diagnoses” is one of my biggest points of friction with the folks in my life who present themselves as experts. For me, expertise isn’t so much about being in possession of the right answers, as it is having mastered the fine art of asking the right questions and being open to new possibilities, and being willing to do what needs to be done, to get to a workable solution/response/alternative to a sticky problem (aka, me).

It’s not about having one single answer (or more than one). It’s about having the capability of asking the right questions and being entirely open to the possibility that there is no single answer (or more)… and that life is a big-ass mystery, so there you have it. It’s about having a firm enough grasp on reality that you can see that you cannot possibly know much of anything for sure, because the world is an infinitely huge place with tons of plausible possibilities, and — tell me again — why is it so necessary to be ABSOLUTELY POSITIVELY RIGHT ABOUT EVERYTHING ALL THE TIME?

I’m rambling, I know. Taking advantage of your (perhaps) overtaxed patience… I apologize for that. But the bottom line I’m trying to get to is in keeping with the nature of this post — for me, there is no ultimate answer, there is no final proclamation, there is no silver bullet. And (since I might be wrong), if there is, I don’t want to know about it. I like having things open-ended. I like having things unresolved. Deep down inside, all my bitching and moaning notwithstanding, I like having a really unsettling level of uncertainty in life, and I like constantly seeking out answers.  It’s the journey I enjoy… not so much the final arrival at the destination. For me, the destination keeps changing, keeps shifting, keeps morphing into something quite different than it was last week.

So long as I can keep up with my rest and not completely fry my system with pointless excess and rank stupidity… so long as I can remember that I am, after all, very human, and nobody’s got this human thing all figured out… and I can remember that I’ve gotten clunked on the head often enough to shear and shred the neural connections that other people tend to take for granted… well, I can accommodate the confusion and the uncertainty and the mystery of it all. I can cut myself a break and pace myself and just keep on keeping on as best I can. I can let myself marinate in that divine uncertainty, that heavenly bliss of who-knows-wtf-is-going-on (and who cares?) And I can let the rest of the world do its thing, as well.

At the end of the day, I guess what matters most to me at this particular point in time, is not so much specific outcomes in undertakings in my life. What matters most to me is the process I go through to get where I’m going. I may never arrive at exactly the “right” place, or achieve precisely what I set out to. But if I’m true to myself, to my heart, to my convictions, and I don’t let the meanness of the world get to me… if I can manage to make room for love in my life as frequently as possible, and I can extend a helping hand to others along the way… then wherever I end up, and whatever shows up on down the line, will have its place.

Mystery.

Discovery.

And more.

All Good.

The Paradox of Sleep

NICABM’s blog has a great post — and short video — about the importance of sleep.

What’s the big deal about not getting enough sleep? There are connections between sleep deficiency and a weakened immune system, muscle aches, headaches, nausea and, as you might know if you sometimes don’t get enough sleep, irritability.

Studies have shown that those who sleep fewer than eight hours per night are also more likely to be overweight (an inverse correlation between less sleep and weight gain). Yes, the less we sleep, the more we seem to weigh. The difference between six and eight hours of sleep will soon be measured in pounds!

Beyond that, driving while tired can be just as dangerous as driving while intoxicated. And, those who don’t get enough sleep also have higher levels of anxiety, depression, and stress.

Like I need more anxiety, depression, and stress… let alone the extra weight.

I’ve heard it said that not everyone needs to have a full 8 hours of sleep a night. But I do feel like a different person, if I get at least 8 hours — and an afternoon nap.

There seems to be a real theme emerging about sleep. Maybe it’s the summer, and how busy everyone has been. Or maybe it’s the impending drama (disaster?) of the revamped healthcare system that has everyone thinking about preventive care?

I, for one, am looking for (and developing) as many preventive measures as I can find, so I can reduce my reliance on the traditional “healthcare” system. That includes getting more sleep.

Connections between pain and PTSD

The past couple of weeks have been crazy for me, and it’s taken somewhat of a toll. I’ve been busy with work, busy with other activities, busy, busy, and more busy. I also did some traveling for about a week to out-of-state relatives, for a big family get-together. In and of itself, it was a great time. But the change in my schedule, the long hours of driving — over 30 hours, all told, in the car — not being able to get enough sleep, and the change in food choices (how do they eat that stuff?) all threw me off, big-time.

I managed to keep it together and not completely blow-out/melt down during the trip, or immediately afterwards, which often happens when I travel to this particular branch of the family tree. But the past few weeks have been packed full of crazy-busy-ness that I now realize has been a pretty concerted effort to dull the pain of the trip.

I’m not talking about emotional pain… though it’s never easy to spend time as an outsider, when everyone else is connecting and having a wonderful time being together — I’m the oddest bird in the family, and between my difficulties in keeping up with what’s going on around me and my narrow and intense interests that aren’t run-of-the-mill, people often don’t know what to do with me.

What I’m talking about is physical pain.

Yes, physical pain — the kind that burns, that aches, that throbs, that stings. The kind that makes my clothing hurt me, that rakes my legs when my pants rub against them… the kind that makes me jump whenever someone touches me… the kind that sends a shock wave of smacking ache to the marrow of my bones when my spouse puts their hand on my forearm… the kind that keeps me from sleeping, because I can’t stand the feel of sheets on me, but I also can’t stand the feel of air-conditioning blowing across my skin… the kind htat gets worse when I am stressed or tired or upset or all of the above… the kind that I often don’t even know is there until someone makes contact with me, and I jump, and they feel like they’ve done something to hurt me. They have. They didn’t mean to, and they would never do it on purpose. But they hurt me.

It’s not just the emotional pain of family visits that gest me. It’s the physical pain, as well.

Here’s the deal — for as long as I can remember, I have had issues with a whole slew of sensory problems, the most disruptive of which was body-wide pain. I can remember, ever since I was a little kid, feeling like I was being hit, when people would just reach out to touch me in very innocent, social, appropriate ways. I would shrink back from them, and they would often take offense or get angry with me for “rejecting” them. It sorta kinda messes with your head, when the people who love you the most cause you intense pain when they try to show their affection for you. And it tends to muck up your relationship with them, when you can’t accept their (appropriate) affection, but they don’t understand why.

To tell the truth, I didn’t even understand why. It’s hard to explain, unless you’ve been there, but the experience of painful touch is such a visceral, physical thing, it sometimes doesn’t translate into words. It’s just there. You can’t describe it, you can’t even really pinpoint it. Sometimes you have no idea it’s there, until someone makes contact with you. Then, all you know is, it hurts, and you pull away to avoid it, so you can just get on with your life.

And you do things to avoid/mitigate it. You steer clear of expressive people. You avoid demonstrative friends. You always keep more than arms’ length away from other people, just in case they reach out to you. You spend time with people who either don’t like you or couldn’t care less about you, because the chances of them touching you is small to none — and it’s easier to be around those types of people, than the friendly ones who like to make contact.

These things are done on a subconscious, instinctive level, and sometimes they don’t even register with you when you’re doing them. Like pulling away from people when they come close. Like shrinking back from a hug someone is trying to give you. Like jerking away quickly when someone touches you accidentally.

And depending on how sudden or shocking the pain is, it can trigger a whole cascade of other sensations/symptoms/reactions that look a whole lot like PTSD.

Over at Helpguide.org, I found this list of symptoms

Re-experiencing the traumatic event

  • Intrusive, upsetting memories of the event — memories of past painful contact tend to show up suddenly
  • Flashbacks (acting or feeling like the event is happening again) — yes, it does feel like it’s happening all over again
  • Nightmares (either of the event or of other frightening things) — sometimes nightmares do follow an extremely painful episode, tho’ that’s rare
  • Feelings of intense distress when reminded of the trauma — yes, it is intensely distressing to be reminded of it, it just sends me in a downward spiral
  • Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating) — my heart sometimes starts pounding, I tense up, and I feel sick to my stomach, when people touch me, sometimes

PTSD symptoms of avoidance and emotional numbing

  • Avoiding activities, places, thoughts, or feelings that remind you of the trauma — I tend to avoid physical human contact of any kind; women frighten me, because they tend to be so tactile, and it’s literally too painful at times, to interact with them
  • Inability to remember important aspects of the trauma — I tend to block out the particulars of painful experiences. All I know is, it’s hurt me before, like it’s doing now
  • Loss of interest in activities and life in general — Why should I get involved, if it’s just going to hurt like the dickens?
  • Feeling detached from others and emotionally numb — Oh, yes… ’nuff said.
  • Sense of a limited future (you don’t expect to live a normal life span, get married, have a career) — how precisely am I supposed to live fully, if the experience of basic human interactions promises me pain?

PTSD symptoms of increased arousal

  • Difficulty falling or staying asleep — could have something to do with my insomnia?
  • Irritability or outbursts of anger — yet one more contributing factor
  • Difficulty concentrating — it’s tough to concentrate, when you’re on high alert. Especially if you’re working with tactile people.
  • Hypervigilance (on constant “red alert”) — someone might be approaching…
  • Feeling jumpy and easily startled — but of course

Other common symptoms of post-traumatic stress disorder

  • Anger and irritability — not being able to establish comfortable human contact makes me nuts and pisses me off
  • Guilt, shame, or self-blame — why can’t I just be normal like everyone else and tolerate a hand on my shoulder?
  • Substance abuse — been there. Thank heavens that’s behind me.
  • Depression and hopelessness — my occasional visitors
  • Suicidal thoughts and feelings — once upon a time, occasional visitors. Now, very rarely.
  • Feeling alienated and alone — not just feeling… BEING alienated and alone
  • Feelings of mistrust and betrayal — it’s hard to not feel that way, when everyone around you might possibly cause you pain
  • Headaches, stomach problems, chest pain — the first two, yes. The third, not so much

So there we have it — PTSD arising from chronic body-wide pain. Painful touch. There’s even a word for it — Allodynia (meaning “other pain”) — a painful response to a usually non-painful (innocuous) stimulus. I haven’t been formally diagnosed. That would require that I talk about it to my doctor. And talking about it out loud to anyone has never really been an option for me, except for with my last therapist who is long gone by now. It’s just too painful. Emotionally and physically.

I’d rather keep my own counsel and just live my life. Pain-free. Alone, but pain-free.

Being alone not only keeps me out of arms’ reach (literally) from people who may hurt me, but it also keeps emotional upheaval at a minimum. It’s hard to get worked into a state, when you don’t have much contact with people who affect you emotionally. I can block out all the politics and social drama pretty well. But the emotional connections I have with people… well, they’re trickier. So, I steer clear of them, by and large. And I steer clear of emotionally charged subjects with people — like avoiding talking about my chronic pain issues with my doctor.

It’s wild, how emotional distress can heighten physical pain. Emotional pain sets off an alarm state with me, and that alarm state unleases a whole avalanche of stress hormones and hypersensitive biochemical agents into my system. And the buildup of all the stuff that gets “stuck” in my system does not help me. Not one bit.

Over at Healthjourneys.com, Belleruth Naparstek quotes from her book Invisible Heroes and describes it well:

Chronic Pain Conditions
This constant activation of the alarm state leads to an accumulation of metabolic waste products in the muscle fibers, and the release of kinins and other chemical pain generators in the tissue, resulting in myofascial pain and the appearance of those seemingly intractable chronic conditions such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic headache, TMJ and more.

And because these conditions are generated in the brain stem and the motor reflex centers in the spinal column, and routed through a perturbed, automatic, arousal circuitry, peripheral forms of treatment provide only temporary relief.  Constantly activated by everyday sensory cues, normal muscle movement and spontaneous memories, symptoms grow and become more and more entrenched over time.  In other words, this is one nasty gift from the kindled feedback loop that, if not interrupted, will just keep on giving.

Our epidemiology research has already shown us an astounding percentage of people with baffling chronic pain conditions and “functional” diseases that have no obvious causes, who have been found to have prior histories of severe trauma.  Probably if we could tease out the subset of traumatized people who experienced substantial dissociation during their trauma, and a truncated freeze response in the midst of it, we might find closer to one hundred percent suffering from posttraumatic stress.  Unfortunately for them, they are often assumed to be malingering or engaged in attention-seeking behavior for neurotic reasons, instead of suffering from a very serious, self perpetuating condition with a potentially worsening trajectory.

Included in this group of maligned and misunderstood patients would be scores of people suffering from pelvic and low back pain, orofacial and myofascial pain, genito-urinary and abdominal pain; interstitial cystitis; and the previously mentioned headache, fibromyalgia (FM), chronic fatigue syndrome (CFS), and reflex sympathetic dystrophy (RSD); irritable bowel syndrome (IBS), inflammatory bowel disorder (IBD), multiple chemical sensitivity (MCS) and migraine.

And there it is — in part, anyway. The post over at Belleruth Naparstek’s blog asks Is There a Connection Between Fibromyalgia and Traumatic Stress? but it’s not just about Fibro, to me. It’s about the “and more” she mentions. It’s about the “whole lot more”.

So, what the hell can I do about this? I’m of the mind that the best reason to talk about anything difficult, is to figure out what to do about it to make it better. To reduce the quotient of human suffering in the world. That includes my suffering (I’m in the world, after all). What can I do about this pain business?

Well, first, I need to get back on my schedule. I need to get back to my sleeping routine, which I’ve been doing pretty well with. I need to get back to eating the right kinds of foods at the right times of day — and I’ve been doing that pretty well, too. I also need to exercise and do other things that will enable me to discharge some of the built-up stress from the trip. I tried explaining to my new therapist how disruptive that sort of travel is to me, but they didn’t seem to “get” the intensity of it, so I’m not getting much support there. Screw it. I’ll support myself. I’ve been having a lot of good long cries, in the privacy of my own company, over the past few days, and that seems to be helping me. I also need to get back to my regular work schedule and just get some stuff done. Being productive has a way of chilling me out nicely, so I’ll do that.

And drink plenty of water. Take some Advil before I go to sleep. Listen to the Healing Trauma CD from Belleruth Naparstek to deal with the PTSD. Have a good cry. And another. And another. And make sure I let loose in my own company, away from others who neither understand nor want to understand just how hard things are for me… and end up minimizing and negating and invalidating my feelings about what I really go through, and tell me I’m fine and I don’t have a problem and I shouldn’t worry about this stuff,  just because they either don’t have the emotional resources to hang with me, or they’d be too traumatized, themselves, if they knew what it’s really like to live in this body.

Most of all, I need to keep it simple. Count my blessings. Remember just much good there is, along with the bad. And remember, tomorrow is another day, and all things considered, I’m pretty lucky to be alive.

Good progress on the insomnia front

Something quite magical has been happening in my life, lately — I’ve been getting more than 6 hours of sleep each night. To people who have no trouble falling asleep and staying that way until they get 8 hours, this might not seem like a big deal, but it is to me.

Leading up to my last MTBI, I couldn’t sleep much more than 3-4 hours a night. I got 5 hours if I was lucky. I was regularly waking up at 3 a.m. (after getting in bed around 11-11:30)… just waking up. BAM – I’d be awake – and I couldn’t get back to sleep, no matter how I tried.  My system was fried, my mind was fried, my life was fried. I was in a crazy intensely stressful job that was tweaking my PTSD off the charts. And when I fell down the stairs at the end of 2004 and hit my head hard on the top 3 stairs, it was the coup de grace (pun intended) of a long progression of gradually worsening conditions in my life.

In a way, it was a good thing that I had to leave that job within the  year after my TBI, but I really miss the money…

Anyway, after I fell, my insomnia did not improve at all. And then more crap started happening in my life — family emergencies and tragedies, medical crises, personal crises… everything got even more intense, even more crazy, and it was impossible for me to tell what exactly was going on or why things were getting so mucked up. It was like my brain was in suspended animation — nothing seemed to be firing properly, nothing seemed to be working as it should. It would have made me nuts, if I’d understood what was going on, but I didn’t.

As you may or may not know, slowly things have clarified for me, and I’ve taken a lot of steps over the past years to set things to right. But one important aspect has eluded me — getting enough sleep. I had gotten acclimated to getting maybe 6 hours a night, and I thought I was doing well when that was happening. But plenty of people have informed me that you really need 8-9 hours each night, if you’re going to function properly.

I took a good hard look at my life, and I realized that yes, I actually was usually exhausted. I was usually overly fatigued. I had just gotten used to the feel of it, I’d acclimated to the experience, to the point where I thought it didn’t bother me. It was just how it was… I had resigned myself to being constantly tired, and I kept myself going on caffeine and projects and having a jam-packed schedule all the time. I left myself no downtime at all. If I had downtime, I just felt bad, so I didn’t bother giving myself any rest.

Like I said, on a certain level it didn’t bother me. But logically, I could see that something was amiss. Everyone was telling me I needed more sleep — from friends to family to therapists to doctors — and it occurred to me that what they were saying probably had merit. They were folks I trusted, and whose input I believed. They had no reason to deceive me, and I had no reason to disbelieve them.

So, going by a purely rational approach, I decided to try to get more sleep. And I tried to stop pretending that being tired all the time was okay.

I tried:

  • Taking naps whenever I could, especially on weekends.
  • Taking Benadryl to knock myself out, when I couldn’t even begin to relax.
  • Doing very rigorous chores that wore me out.
  • Taking hot showers to relax.
  • Listening to guided meditation (Belleruth Naparstek’s “Stress Hardiness Optimization” CD, especially)
  • Doing progressive relaxation.
  • Deep breathing and counting my breaths and alternating opening and closing my eyes at longer and longer intervals, so that my body would get the idea I was going to sleep.
  • Closing my eyes and moving them around behind closed eyelids — like I was in REM sleep.
  • Sleeping in different places – in the guest bedroom, on the living room couch, in the car.
  • Meditation
  • Exercising mor
  • Tracking the amount of sleep I was getting, so that I could tell — objectively — when I was probably over-tired (when I’m over-tired, it’s hard for me to tell subjectively that something is wrong)

All these things, to some extent have helped me. And over the past several months, I’ve been able to sleep more and more. I’ve now gotten to the point where I can literally sleep 8-9 hours, under the right conditions, which is a really “new” experience for me in light of my past 6 years or so.

I have also found it helpful to learn about the parasympathetic nervous system and the important jobs it does in maintaining health and vitality. Doing things like deep breathing and relaxation to help jump-start my parasympathetic recovery from stress, has been a big part of helping me get to sleep. The more relaxed I am, when I go to bed, the easier it is to sleep.

It might sound basic and obvious, but that fact eluded me for many years.

Recording my hours of sleep each night has been really helpful, just so I can tell how I’m doing and where I need to improve. After all the last thing I want, is to undermine my health just because I can’t subjectively assess the level of my fatigue. If I can’t do it subjectively (when someone asks me how I’m feeling, even if I’m exhausted, if I’m caught up in a project or I’m “locked on target” for something I need to get done, I am honestly feeling no pain or fatigue), I can do it objectively by tracking my hours of sleep each night.

Most of all, I’ve been benefited by listening to Belleruth Naparstek’s “Stress Hardiness Optimization” CD — especially the last 2 tracks for relaxation and restful sleep. I put on my headphones and play the last 2 tracks, and I’m usually asleep by the middle of the first track. If I can’t sleep by then, I’m usually under a few minutes into the “restful sleep” track. In fact, it’s worked so well that I haven’t the faintest idea what’s at the end of the “restful sleep” track, since I’ve slept through it over and over.

I make a point of listening to the CD every day for several weeks, then I’ll take a little break, and go back to it. I’m a real believer in it, and since I’ve become  increasingly sensitive to Benadryl (it knocks me out too much over the following days – it has a very long half-life), the guided imagery has turned out to be my “prescription” of choice for insomnia.

So, now I know I have tools to help me sleep when I need it. And that takes the pressure off… which also helps me relax… and sleep.

What will you do with your one precious life?

I’m reading “The Leader of the Future”, a collection of essays on leadership and leading written by people who make a point of knowing about that stuff. It’s quite inspirational. I can really use it, because I’m starting to lose momentum with some of the important work I’m doing. I have to get my act together and talk to people, but all of a sudden, I’m getting turned around.

I need to step back, focus in and prioritize. Stay the course. Don’t get too distracted by Phase II and Phase III details. Pick and choose. Take in inspiration, as well as cranking it out. Read “The Leader of the Future” and ponder what the experts have to say.

In the midst of all my busy-ness, I’ve been contemplating fecundity, lately. I look around and I see how lavish and almost obscene the world is with all its variety and its intensity and its energy and its depth. We really are living in an energetic amusement park. I can’t believe how much is involved in little, tiny, “simple” things like getting ready for work in the morning. There’s just so much to it, if we care to take a look.

At the core of this has been my re-surging awareness of mortality. When I was a kid, I was pretty caught up in an awareness of death. Lots of people in my life either died or moved on, so there was this constant sense of loss and, well, death. And I was pretty maudlin about it, at times.

On the other hand, I was really — magically, intensely, wonderfully — caught up in the Experience of the Goodness of it all. Just drunk with love of life. Intense, all around. That intensity followed me through my childhood and youth and into my adulthood, keeping me moving from job to job, from place to place, never wanting to settle down for long, because there was always something else to see, hear, feel, experience. And all I really cared about was soaking it ALL up, so I could be the best artist/poet/novelist/essayist I could be. My life was my art, and it was a perpetual work in progress. I was on a mission to experience as much of life as I could, while I could. Because I was always very aware of my mortality, just lurking ’round the corner…

Now, over the past 15 years or so, as my life has stabilized and I’ve gradually moved away from that experience-focused approach to life, I’ve settled into a kind of systematic lull. And in the process of just going about my business, I kind of got “glazed over” with the daily heating-and-cooling of my energies, like I’ve been lacquered by pedestrian life. Going through the motions of the everyday… having unfortunate things happen… getting injured, getting hurt… recovering from the incidents… having more shit hit the fan… rebounding from that… Always moving forward… Life has slowly but surely melted and hardened over me, one thin layer at a time. And I’ve welcomed it in a way, because it gave me a break from all that constant upheaval that is very entertaining at the time, but ultimately gets me nowhere. I welcomed the break from that constant bargaining, negotiating conversation with Death.

I focused so exclusively on Getting Things Done… taking care of business… that I actually forgot I was eventually going to die. And I let my existential, experiential self “go to pot.”

But in the past couple of years, things have started to open up for me again. The difficulties I encountered put little stress fractures in my lacquer shell, and the light and air started to come in again. When I went through the MRI and EEG last winter and had to deal with all the fallout of some weird, unexplained neurological episodes, and I was getting to know what was REALLY going on inside me, despite my outward appearances (I bought my own cover), all of a sudden it occurred to me, “Oh my God, I’m going to die!” I really felt it. In my bones. To the marrow. The little voice in the back of my head got louder and louder and louder… and it wouldn’t go away.

I fought it at first, then I realized — “Hey, this is how I used to always feel! It didn’t keep me from living my life then, and it doesn’t need to stop me now.” In fact, if anything, in the past, it made it easier for me to live. Because I knew I had no guarantees, no promises of x-amount of time to get things done, no contracts made out in triplicate guaranteeing me such-and-such in life. I was free. Because I knew there was always a chance that everything would be over shortly, so I’d better make the most of my time and not worry so much about what other people had to say about it.

That’s kind of where I’ve been for the past several months. The voice is still there, still reminding me, still nudging at me. And I feel a great sense of urgency, a pressing need to Get On With It and make happen what I’m supposed to make happen. All around us, the world seethes and teems with life. All over — from the seas to the skies to the earth in between. It’s rich, it’s almost obscene in its opulent lushness. It’s full of every kind of energy you could ask for. And it’s all ours for the experiencing. Quelle luxe!

I just feel so blessed. I feel like we are ALL so blessed. The whole world is at our disposal, and it’s literally waiting for us to make our mark in it.

So, no matter what life is throwing at you these days, don’t hesitate to make your mark! Feel what you feel and do what you do. The rule-makers and politicians and bean-counters of thd world are lost in their own little dessicated microverses that are way too controlled and narrow-minded to sustain LIFE. I suspect they, too, have been lacquered over by life, and I do feel compassion for them. Maybe someday they will have the benefit of “awful” experiences that put cracks in their thick shells to let in the wind and rain and sunlight and make real growth possible. We all have the capability of letting that happen. We just need to let it.

So…

Look to the heavens. Look to the depths. Of course you’re going to slip and fall, now and then. You’re going to stumble and falter and wonder what the hell you were thinking when you decided to __________________. But all these things — good-bad-ugly-glorious — are the fecund compost of life that have worth and merit and a bittersweet beauteous bite to them when you quaf them from the waterfall of All That Is.

It just is. And it is Good. So go with it.

Of course it’s awful… Life is awful.

Dear TBI survivor,

Not to depress you or anything, but think about it –you’re not the only one suffering, and suffering is not exactly unfamiliar in the world.

Yes, it’s terrible that you have sustained an injury that’s screwing up your life. And it’s a tragedy that you’ve lost so much along the way. The world was your oyster, and now you’re struggling to just handle the basic day-to-day stuff.

It sucks. It’s rotten. It’s terrible. I’m not being facetious. It really, really is bullshit.

And that’s life.

I read the other day that Africa’s population has doubled. That’s twice as many people starving, in pain and anguish and suffering genocide. India and China either abort or throw away or give away baby girls, from what I’ve read. In Latin America, torture and abduction and political oppression are “standard issue” experiences. In the Middle East, young men (and women) are actively recruited and militarized and sent out to kill and be killed, continuing a never-ending cycle of violence and retribution that sucks the rest of the world into their strife on a globally disruptive scale.

How much more wretched can human experience be?

Lookit — the evidence that life just sucks is pretty compelling. I work with a Russian individual who tells me there’s a saying that goes something like, “With today’s advanced technology and medicine, we can add another 20 years to your pointless existence.” Which strikes me as being very honest. Depressing, but honest.

Oh, well… It’s not like any of this is new. People have been preying upon each other and flaying each other alive for as long as they’ve been running around the planet. People have a real skill at being real bastards to one another, and they have a great talent for screwing up things that could/should be easy and fun and positive.

But the real issue is, what we do in spite of it all. What do we do with this one bright shining life we all have? What do we do with the spark that ignites us? How do we fan the flames of hope? How do we keep ourselves going, when all seems lost? Death and destruction and desperation are nothing new. People have been facing up to them and dealing with them for aeons.

And out of it all comes, well, something better. Somehow, people manage to compost the shit of life and grow real progress. In Africa, a lone woman figured out how to plant and sustain trees that are “re-greening” large areas of Africa. India and China, say what you will, are cradles of civilization and have — and continue to — contribute plenty of advancements to the human experience. Latin America is a huge driver in the international marketplace. And despite the upheaval and destruction in the Middle East, there is some pretty cutting-edge peaceful progress being made there, in steps, however small. But it’s still progress.

When I’m at my most despairing, my most depressed, I tend to recite that Russian mantra about life being essentially pointless. Maybe it’s true. But it’s also — in places, at times — tremendously interesting. And it can also be a lot of fun. I’ve been injured. At times, very badly. I have lost a lot of good things in my life. I have had to say good-bye to some pretty cool parts of my past. And I have had to sacrifice a great deal, just to keep standing.

But hey, that’s life.

At least I’m still here. And I always get another chance.

So long as I don’t give in to the awfulness.

More talk about resiliency

There seems to be something in the air… Human resiliency in the face of trauma is on my radar again.

Over at the NICABM blog, there’s a post about Trauma Recovery with Tibetan Monks that I found really interesting. The video is a short blurb/(promo?) for a teleseminar with Dr. Michael Grodin who is the co-director of the Boston Center for Refugee Health and Human Rights. While I’m not a huge fan of using YouTube as an advertising vehicle (I like to watch videos that are self-contained “units” of really useful information — like some of the TBI education videos I’ve watched), I did find it interesting to hear about different sorts of therapy being used to work with survivors of torture, imprisonment, and other trauma.

I also found it informative to hear a little about what can happen to a Tibetan monk who is thrown in jail by the Chinese authorities. “Free Tibet” comes to mind…

Anyway, I’ve been thinking a great deal about my own resiliency, lately. Not only thinking, but living it. The conversations in the back of my head about what I need to do and how and why and when have given way to a more instinctual kind of flow. Even though I’m in a lot of pain, my ears have been ringing at an unbelievable rate, my balance is off, and I haven’t been sleeping as well as I’d like, that’s not stopping me. I’m just going with what seems right to do at the moment, these days, and doing what I can to keep up with my “self-maintenance” and mindful living, and it all seems to be working out pretty well. I’ve got projects in the works I can be proud of, and that I’m quite happy with. It’s good. Very cool things are happening, that are totally unexpected and unpredictable… but still good.

See, that’s the thing — I never know when things are going to turn around for me. Maybe I’ve been hit in the head too often to have a good sense for when things are going to get good again, or maybe it’s just the human condition to be unaware of the Good that lies just around the corner. Whatever the case may be, I’m constantly surprised by good fortune, and it saves my ass time and time again, as I’m slogging away… I just have to hang in there. Eventually, if I keep trying and keep going, chances are good that I’ll happen across an opportunity that will work in my favor.

You just never know…

Yes, times have been tough. Yes, I’ve gotten knocked around a great deal. Yes, I’ve lost a lot and have had to build back my life several times over. Yes, I was homeless at one time. Yes, I worked my way back from the street to a great job and a good profession and the kind of life I can be truly proud of. Yes, I got “body slammed” again, and yes, I cluelessly burned through hundreds of thousands of dollars I’d earned back… in record time. Yes, I’m struggling on a regular basis to find my footing. Yes, I have to work pretty hard at things that others find easy.

But you know what? That’s okay. I’m learning a lot in the process, and I feel smarter as a result -  tho’ whether I am smarter, is another issue ;). If nothing else, it builds character. I know that the idea of character is somewhat nebulous in this 21st century. In fact, it’s pretty much fallen off the radar — nowadays, the ticket to success seems to be popularity and marketability, not so much what you’re made of inside. But that’s not stopping me from developing my own life and my own character… even if it doesn’t make me instantly popular or famous.

Ultimately, what matters most is not what others think of me, but what I think of myself… and the real results of my life.

That’s what I’m focusing on.

Now, back to work…

Which mistakes do I keep?

Creativity is allowing yourself to make mistakes. Art is knowing which ones to keep. – Scott Adams

I just came across this quote, while poking around various blogs. I had intended to write something else… but I forgot what it was, so I’m going to go with this idea.

On the loooooooong road to mtbi recovery (which seems like it is never over), I have made plenty of mistakes along the way. It sorta kinda goes with the territory. I mean to say one thing, but then I say another. I mean to do one thing, but then I do another. I mean to accomplish one thing, but then I mess it up and it doesn’t get done. Along the way, it’s easy to get turned around and confused and lose my place. I do it all the time.

So, why am I not worse off in my life? Okay, I admit, my life is not a template of the American Ideal. I don’t have the perfect spouse and perfect 2.4 kids in a perfect house with perfect cars with a perfect job and a perfectly fat wallet. I don’t drive a Prius or a Hummer or a pickup truck or a motorcycle or any other vehicle that would indicate I am a Person Worth Knowing. I don’t have a closet full of tailored clothes with different well-polished shoes for every occasion. I don’t have many of the signs of success that one would expect from someone who is Doing Extremely Well For Themself, and frankly, some days it’s just a constant struggle to get by.

But in spite of all my struggles and screw-ups and messes I’ve made, I’m doing okay. I’m happy, I have love in my life, and I like what I do for a living. In spite of all the jobs I’ve totally messed up, the situations I’ve blown to hell, the relationships I’ve trashed, the money I’ve lost, I’m still standing. And my life — oddly enough — keeps getting better.

Why?

I think it’s because I don’t let the screw-ups keep me from pursuing my version of success. I learn from my mistakes — actively, intentionally, regularly — and since I make lots of mistakes, I tend to learn a lot. And since I’m so friggin’ tenacious and indomitable (bad days notwithstanding), I never stop, till I get where I’m going. Sometimes it takes an awfully long time for me to get where I want to go, but eventually, I get there… even if my definition of “there” changes along the way.

For years, I’ve focused on what I call “the art of living” — making my life into an intentional expression of my individuality, rather than abiding by some standard-issue cookie-cutter stereotype. Long before I knew why I couldn’t fit into the “norm”, I realized it wasn’t a good fit for me, and I resolved to find other, better ways to live my life, in spite of my oddness. I’ve made a point of not forcing myself into a narrow definition of success, and I’ve really worked at taking what good I could find from all the wreckage of my life around me.

There have been intense internal conflicts, to be sure, and I’ve been lower than low many, many times. But when the dust has settled, time after time, I’ve always managed to figure out a way to use what I learned for my benefit.

When I was younger, I was bound and determined to be a writer — to be the best writer of my generation — and I channeled all my energies into being open to the full range of what life had to offer me. I didn’t care so much about achieving and accomplishing and being The Best in others’ eyes. It was more about being the best in my own eyes. I kept open to the full range of life experience. I didn’t worry so much about whether or not things turned out the way I’d planned. For me, it was all about the experience. Learning what it meant to be human, so I could write believable stories about believable characters.

Of course, a whole bunch of mild TBIs kind of put a damper on my literary aspirations – it’s difficult to get published, when you can’t figure out how to communicate with publishers and editors and you alienate just about everybody who reaches out to help you without understanding how or why you’re doing it. And I’ve had to seek out alternative ways of getting published, essentially letting go of that childhood dream. I realize now, it’s probably not as plausible as I once thought it was.

But my orientation towards life remains the same — it’s an experience to be had, not a task to be completed. The full range of what life throws at us is a smorgasbord of sensations, a veritable feast for all five senses — six, if you count the one you can’t put your finger on. All of life is this amazing cornucopia of events to be lived, experiences to be had, lessons to be learned. For me, it’s less about specific outcomes, and more about the quality of the experiences I’m having. Quality of life… that builds quality of soul… and character.

I came across an interesting blog post over at Daily Strength today:
How Important is Resiliency in Trauma Recovery?

It talks about how folks in the mental health field used to think that once traumatic damage is done to a person, they’re damaged for good. But that ain’t necessarily so. A person who is abused as a child isn’t necessarily going to be either an abuser or a perpetual victim as an adult. Human resiliency also plays a role, and people can — and do — overcome nasty crap all the time.

Given the course of human history, I have to say I agree. If everyone who got beaten up and mistreated as a child turned out to be either a perpetual victim or a perpetrator for the rest of their lives, I think we’d all be dead by now. There would be no one left, for all the killers would have killed the victims… and then wiped each other out.

No… that hasn’t happened (yet).

Yes… there’s more to the story than our past.

And there’s more to screwing up than making a mess of things.

Sometimes, the mess can be quite instructive.

Sometimes, a royally mucked up situation can be even more valuable than total success all the time.

Which, for someone like me, means that my chances of ultimate success are actually better than for someone who gets things right all the time.

Think about it –

If

as Winston Churchill said, “Success is the ability to go from one failure to another with no loss of enthusiasm,”

and

I have been uniquely shaped to not only go from one failure to another, but also keep going, keep diving in, keep forging ahead, no matter what (due at least in part to my head-injury-diminished aversion to risk and danger, as well as my intensely stubborn streak)

then

it stands to reason that I am uniquely positioned to have a very successful life, despite my injuries, despite my deficits, despite my history, despite my muck-ups.

In fact, one might say that my injuries and deficits even contribute to my success.

Not that I’m saying that mild traumatic brain injury is a ticket to the Good Life. Far from it. But if I can figure out a way to make it work for me sometimes, instead of constantly against me, then things don’t necessarily have to turn out badly.

Ultimately, getting back to Scott Adams’ quote above, creativity is not about never making mistakes, it’s about allowing myself to make lots of them — and art is about being able to tell which “mistakes” are worth keeping.

Personally, I’d rather have an artful life than a carefully checked-off list of t0-do items.

But that’s just me.