On Psychos

I can't seem to face up to the facts
I'm tense and nervous and I can't relax
I can't sleep 'cause my bed's on fire
Don't touch me I'm a real live wire

Psycho killer
Qu'est-ce que c'est?
Fa fa fa fa fa fa fa fa far far better
Run, run, run, run, run, run, run away

-Talking Heads, "Psycho Killer"

One of the first classes in my doctoral program was a History of Psychology class, and on the first day of the first class the instructor asked if anyone knew what the word "psychology" meant. Some students ventured guesses like, "the study of the mind", and "the study of cognition", etc.. Having grown up with a good old fashioned Liberal Arts education, I knew it meant the study of the soul.

"Psychology" is the study of the "psyche", the "animating spirit". 

The Online Etymology Dictionary does a fine job of explaining it.

psyche (n.)

1640s, "animating spirit," from Latin psyche, from Greek psykhe "the soul, mind, spirit; breath; life, one's life, the invisible animating principle or entity which occupies and directs the physical body; understanding" (personified as Psykhe, the beloved of Eros), akin to psykhein "to blow, cool," from PIE root *bhes- "to blow, to breathe" (source also of Sanskrit bhas-), "Probably imitative" [Watkins].

Also in ancient Greek, "departed soul, spirit, ghost," and often represented symbolically as a butterfly or moth. The word had extensive sense development in Platonic philosophy and Jewish-influenced theological writing of St. Paul (compare spirit (n.)). Meaning "human soul" is from 1650s. In English, psychological sense "mind," is attested by 1910.

http://www.etymonline.com/index.php?term=psyche&allowed_in_frame=0

 

It saddens me that we have lost this meaning, replacing it instead with the more common colloquial usage of "psycho" to indicate a crazed, often violent individual, as in the term "psycho-killer". Which, if we consider the etymology, really means "soul-killer". Intriguing, no? Ok, probably just to word nerds like me. But there is always a bit of residual meaning left even when the popular use of a word changes dramatically. So you might want to think about it the next time you call your ex a "*%#$ing soul", I mean "*%#$ing psycho". 

 

Reinventing The Wheel, Again

"When I was young
I never needed anyone
And makin' love was just for fun
Those days are gone

Livin' alone
I think of all the friends I've known
But when I dial the telephone
Nobody's home

All by myself
Don't wanna be, all by myself anymore
All by myself
Don't wanna live, all by myself anymore

Hard to be sure
Some times I feel so insecure
And love so distant and obscure
Remains the cure

All by myself
Don't want to be all by myself anymore
All by myself
Don't want to live all by myself anymore

When I was young
I never needed anyone
And making love was just for fun
Those days are gone

All by myself
Don't want to be all by myself anymore
All by myself
Don't want to live all by myself anymore

All by myself
Don't want to be all by myself anymore
All by myself
Don't want to live all by myself anymore

All by myself
Don't want to be all by myself anymore"

 -Eric Carmen, "All By Myself"

I feel like I've been reinventing the wheel over and over again for the last eight years. It's frustrating and it's wasteful and it's wastefulness is frustrating. One of the painful lessens from this experience has been learning the limits of my own endurance. Each day there is a finite amount of energy available for my use. There are no extra reserves. There is no "second wind". I can't gulp down a Venti Starbuck's with an extra espresso shot and pull an all-nighter, those days are gone, baby, gone. So I've had to figure out adaptations. Work- arounds. Back-up plans.

Mostly, I did this on my own.

Why? 

Part of the reason was that when my symptoms were at their worst, information on TBI, and mild TBI in particular, was not as available as it is now. Lord knows, I searched and came up with precious little useful info. 

Another reason was that the majority of my health-care providers didn't have much to say about it. They would dutifully write down the symptoms that I reported, nod sagely, pat my hand, assure me that "things would get better with time" and schedule another appointment in six weeks. If I pressed them for something more, I'd sometimes get a referral to another doctor and the process would be repeated. Throughout all of this, the transmission of information in terms of what type of symptoms I might have, their courses treatments and expected outcomes was largely absent. Perhaps no one said anything because they were afraid of "creating" new symptoms through suggestibility or maybe they really didn't know much about mild brain injuries. Whatever the reason, I was left to figure it out on my own, but as I did, and as I learned more, I discovered that others had figured some of this out before me. So I was left with the questions, "Why didn't anyone tell me?" "Why did I have to learn how to adapt through trial and error when there are multiple studies on post-concussion syndrome?" 

I was asking all the right questions to people who should have been the right people, but I wasn't getting good answers. 

I still don't have good answers not for those original questions and not for the questions of WHY I didn't get good answers in the first place. But that IS a question we should be asking. If people in the midst of a health crisis are not getting vital information from health providers about the condition for which they are seeking treatment then there is a problem in the system.

Any health crisis can be overwhelming, but brain injuries are especially challenging because they directly affect cognition. It is at this time, when individual's with TBI's are struggling with decision-making and planning, that they are most vulnerable, and it is at this time that they should be receiving the most support from health-care providers.

Shake Hands With the Devil

 
"The devil ain't got no power over me. The devil come, and me shake hands with the devil. Devil have his part to play. Devil's a good friend, too... because when you don't know him, that's the time he can mosh you down." - Bob Marley

This March was the eighth anniversary of my accident. It's been over seven years. Seven years is often the magical number in many myths and legends. In popular culture it's also believed to be the number of years it takes for "all your cells to replace themselves" so that in seven years' time you've basically rebuilt your body on a cellular level. Not entirely sure about the science on that one, so don't quote me on it, but there's still plenty of magic in the number. The "seven year itch" for example. Although most couples crash and burn long before year seven.

Having made it to and past this mystically significant breakpoint I can say that there have been changes. I'd like to think that I befriended some of my devil's along the way. In a somewhat shameless riff on a Keyser Söze quote, I've lone professed that the only power the Devil truly possesses is the ability to make us forget. Plenty of things got forgotten over those eight years. Names. Dates. Appointments. Bills. Assignments. Promises. Funny things you said. Stories I wanted to remember. Smiles. The way home. Passwords. New Passwords. Shopping lists. My own face. How to type. Math. People I went to school with. Things I should be sorry for. Plans. Writing. Safe places I put important things. And time. 

While there are other things that are perhaps worse, time may be the most debilitating thing to have forgotten.

(By the way, I may have written about this before, but, sadly, I've forgotten that too. Sorry if this is redundant.)

It took at least four years before the Devil and I can to terms on time. We shook hands on that and agreed with the understanding that things were just going to take longer now. And that I would never be able to accurately estimate how long something lasted while it was occurring. I would also never be able to accurately estimate how long it would take to accomplish a task or travel from point a to point b (even if using GPS or Apps) and I would not be able to accurately calculate future time. By that I mean I can not accurately look at a clock and say....figure out what time I will need to leave the house if I hypothetically need to get somewhere at 9 and it will take me half an hour to dress and it will take me an hour and fifteen minutes to drive there plus ten minutes to stop and get gas. YES. I KNOW that this is simple math, or at least is should be or is it FOR YOU. Sadly, I cannot do it. Something goes horribly wrong in my brain and I screw it up EVERY. BLESSED. TIME.

Then I sit there, behind the wheel, stopped at a traffic light, wide eyed, in dis-belief, thinking, "This is NOT POSSIBLE. I figured it out. Then I figured it out again. I'm not stupid. How does this happen?" And I look over and see Old Nick standing on the corner, leaning against a streetlamp pole chuckling, smoking his cigarette down to a grey, ashy nub.

If I let other people do it for me, I'm fine. I swear to you. A friend and I can leave at the same time, from the same place, going in two cars, and I'll get there twenty minutes later, because that's just the way it IS now.

So I build extra time into everything. All the while hating that I have to make this sacrifice. But it's still better than it was before. Before there was screaming and crying. Pounding on car steering wheels in traffic. Road rage where I was trapped on highways praying to gods even I've never heard of for salvation, for deliverance, for an airlift rescue. And there was my friend Nick in the convertible behind me, laughing, playing that horrible techno way too loud, looking like he'd partied for three days straight in the same clothes.

Knowing time ran differently for me, and likely always would, was one of the hardest things to come to terms with. I wanted that back, the way I wanted to be able to see in the same way. The way I wanted to be able to sleep without my stupid Lunesta. 

Someone, I forget who, said that the experience of time is what makes us human. They might be right. If so, I suppose that makes me just a bit less so.

At least I know my Devils now. Most of them anyway. I'm sure there are more lurking in the shadows waiting for the chance to mosh me down.

Life With Brain Injury, Revisited

 

 

“There is a point at which everything becomes simple and there is no longer any question of choice, because all you have staked will be lost if you look back. Life's point of no return.” - Dag Hammarskjold

This blog was originally envisioned as a one-year project. At the time, even that seemed a lofty goal. In the early days after my injury, I couldn't plan what I'd be able to do six hours in advance, much less commit to a year-long writing exercise. But I decided that making a public statement of intent was a great motivator, so I went ahead and titled it "A Year-Long Project". As you can see, I've altered the description. For some time now I've been tempted to return and continue writing about brain injury. Much has happened during the fallow period between my last post and this one. Relationships have come and gone. My brain has changed in numerous ways. I've learned to adapt. I've studied. So it seemly like it might be a good time to return to this project.

I'm currently working on a doctorate in psychology. It's slow going and has been every so much more difficult than a year-long personal blog, but perhaps not in the ways you'd expect. I'll write more about that in the future. Right now I'm more interested in the idea of return, and 

how you know when you've reached the point of no return.

Every week I see clients who have suffered a variety of cerebral assaults - strokes, epilepsy, TBI, dementia, etc.. They allow me to look, however briefly, into their lives and assess how their brains function. Part of what we do is attempt to determine the level of "premorbid function". Although the term sounds somewhat grisly, "premorbid" just means, "before the injury or illness". In a sense, it is much like what I did when I taught writing. Back then, when I read an essay, I had to read what was written on two levels simultaneously. One one level I was reading the words that were actually written, but on another level I was decoding what the student was really attempting to say. In the best case scenario, those two realities matched fairly closely, at worst it was a guessing game when I had to piece together bits of text, trying to make sense out of shattered sentences and improper word usage.

During a neurological assessment, psychologists attempt to measure both the current level of cognitive function and the previous level. In order to appreciate the after, you must understand the before. I was lucky in that I had documentation in the form of IQ tests that I'd taken in school. Most people don't have baseline tests and so we are left trying to figure out where they starting in order to get an idea of the scope of the injury or illness.

I've seen a few clients recently whose injuries and circumstances were similar to mine. I was reminded of how difficult it was, and is, to find good clinicians who understand and take the time to individualize care. 

And so I return, again and again. As much as I'd like to forget about the fact that I am different now, and as much as I'd like to think that I have "recovered", my life revolves around my injury in one way or another. Looking back affords some sort of understanding. It's an attempt to forge something useful from the loss. Did it work? it's too soon to tell. I'm learning that things are often not what they seem and even more frequently no what I thought they were. The one thing I've learned from my TBI is to not be too sure about anything.

Hopefully I'll be able to look back in a few years and say that all of this was worth it.

"Negligence is the rust of the soul, that corrodes through all her best resolves." - Owen Felltham

I've been neglecting this blog. I've been neglecting writing, and other things. It's winter and the snow and ice is just dismal.

My eyes are so dry I haven't worn my contacts for weeks. Dry eyes can be a symptom of head injuries. Strange isn't it?

No, not really. Our brains control everything, our mood, our thoughts, our sensations, the regulation of our bodily systems.

But I'm tired of talking about brain injuries. I don't want to seem like I'm complaining. (I am.) (Sometimes.)

I'm teaching myself how to play the Ukulele. Although it's touted as the easiest instrument to play, it's tricky. My left hand is the chord hand and my left side is the "slow side". But I like it. I'm not good at it, not by any means, but it's fun. Ukulele is a happy instrument, and playing it makes me happy. I'm not worried about being "good" or "good enough" to play for anyone else. I'm doing just that - playing.

And all this while Rome burns.

So many other things are overwhelming. I can't even think about taxes. There are all these lovely free programs for people under certain income levels. (Unemployed should count, eh?) But I've got a bit of complexity, so no one will offer assistance. After months (MONTHS) of struggling to get all my receipts in all the right folders, I stopped at my accountant.

"How much would it cost if I just gave you everything like this? They're all in categories, but I haven't tallied everything up."

She looked at me for a moment, disbelieving, and said, "Well, you might want to do it yourself and just give me the spreadsheets." (This is what I USED to do.)

Really, the mere task of finding and organizing everything had brought me to tears on numerous occasions. The thought of adding everything up and the countless errors and redoing made me feel like vomiting.

"How much?"

"My rate starts at $125 an hour."

I took my files and went home. Mind you, These are the files for 2009 we're talking about.

So they sit in my car. I can stomach bringing them back into the house; that would feel like defeat.

So I play the Ukulele instead. Neglecting you taxes - I wrote a little song about it. Wanna hear it? It goes something like this...

There Is Nothing Wrong With You

"Talking perceptions, people. Do we really see each other for what we really are, or do we just see what we want to see, the image distorted by our own personal lenses? I lost someone today and the funny thing is, I don't even know who she was." Jeff Melvoin, Northern Exposure, Lovers and Madmen, 1994

My friend Sue keeps telling me that. I don't know why it's so important for her that there be nothing "wrong" with me. Part of the problem is probably that she didn't meet me until after the accident. She only knows me as I am now, so for her, there's nothing to compare, no "before" to my "after".

I find it extremely difficult to deal with the "oh, you're fine" attitude. While it is true that brain injuries, especially the mild ones, can be largely invisible injuries, I am impacted daily by my new modus operandi.

I say "new". It's been almost four years since the accident. It's still new to me. Comparatively speaking 37 years versus four - yeah, it's still new.

I understand that many of my friends and cohorts are hitting their midlife stride. With that comes some alterations, changes in vision, hearing, perhaps mild cognitive decline, "Where DID I leave my keys?" But it is fleeting. It is occasional. It is not pervasive. Let me say this definitively, It is NOT the same as a brain injury.

Misplacing your keys occasionally because you're overbooked, or overworked or overtired or over caffeinated doesn't compare. (I know you all mean well when you say things that attempt to normalize or minimize but at some point it just becomes frustrating.)

As an illustration of my point, I offer an example. On Tuesday I dropped of some artwork for a show. I needed to fill out cards which were taped to the backs of each painting. They listed the title of the piece, my name, the medium and the price. I was in the midst of a migraine so from the get go, I wasn't at the top of my game. I made some error and apologized, telling Sue, who was sitting across the table from me, that I wasn't having a good day. She's known me long enough to know that's my code for a "Bad Brain Day". She laughed, made a dismissive gesture and said, "Oh, you're FINE. There's nothing wrong with you."

I seethed, and continued to fill out the cards for my six painting.

After I finished, I said my goodbyes and I left, four crumpled cards balled up in my jacket pocket. On one, I'd written down the wrong media. Another, I'm mis-spelled a word in the title. The third I'd written something on the wrong line, and the fourth - on the fourth card I had spelled my last name incorrectly.

I spelled my name wrong.

How often do you spell your name incorrectly?

How often do you make THAT many mistakes in rapid succession?

The more I think about this incident, the more I want to believe Sue. As I try to come to terms with who I am now, I want to accept my new abilities and limitations as simply factual, without judgement or disappointment or regret. This is how I am. This is who I am. While I am definitely changed, and have definitely lost some speed and some ability, I need to stop judging that fact and, by extension, myself. In that sense, perhaps there really is nothing wrong with me.

You Can Take of Leave It If You Please

"Anyone desperate enough for suicide...should be desperate enough to go to creative extremes to solve problems: elope at midnight, stow away on the boat to New Zealand and start over, do what they always wanted to do but were afraid to try." Richard Bach

Suicide is a hot topic right now. There's been a rash of teen suicides in the U.S. that are being connected in the media, and in many people's opinion, with bullying.

I maintain the unpopular and challenging opinion that healthy people do not commit suicide. Even when the situations in their lives appear bad, or even hopeless, psychologically health people seek different alternatives.

Acknowledging that this is uncomfortable for many people, let me also say that placing blame is one way to make sense out of what feels to many to be a senseless act. We want to know "why". It is a basic human need. We want to make sense out of things that are difficult. How many times have we all heard someone say, "If would all be easier, if I could just understand..."?

It's easier to blame something bullying than to try to understand why someone felt that killing themselves was their only option. Bullying is wrong. People who bully are bad. If the bullying was the final stressor in a series of stressors that pushes someone over the edge, so to speak, then we can feel good about blaming the bullies for the suicide.

But...

There is one problem with this logic. The bullies aren't the ones who pull the trigger, or swallow the pills, or open the vein.

If someone decides to rob a bank because his friends repeatedly taunt him and egg him on society still holds the bank robber responsible for his actions. We each have choices. We choose to seek help or succumb to bullying or torment or financial stressors. People choose their fate. They choose to live or die.

The bully does not make that choice for them. THEY choose for themselves.

With that being said, there are factors that make reasonable choices about suicide more difficult. Being a child or teenager is one of them. Adolescent brains do not have the impulse control abilities of a fully mature brain. What that means is that adolescents have a harder time stopping themselves from doing things, especially when those things relate to peers, or coincide with heightened emotional states.

Ok, once again, adolescence + heightened emotions + peers = bad judgement.

Add a brain injury into that mix and you've got a recipe for disaster.

Brain injury often affects something called "Executive Function". Executive Function is the brain's decision making ability. Brain injury can also damage impulse control and other areas of behavior and emotional regulation.

Do you see how any of these symptoms can make a bad situation infinitely worse when dealing with multiple external stressors (bullying, death in the family, poverty, legal issues, etc.).

The following article is about the suicide death of a football player who, after autopsy, was found to have suffered repeated brain injuries.

http://www.cnn.com/2010/HEALTH/09/14/thomas.football.brain/index.html?hpt=C2

So what's the answer? I don't pretend to know. Perhaps there isn't one. However, I am suggesting that subtle brain injuries are very likely behind some of the adolescent behavior which adults find distressing like AD/HD, ODD, Depression, and Suicidality. I am suggesting that people, especially adolescents, with a known Brain Injury should be monitored differently than uninjured people.

I am suggesting that these injuries can, in some people, create a perfect storm of depression, hopelessness, frustration and impulse control and can end in suicide.

I am also suggesting that there is always more than one reason why someone commits suicide, and the easy answers aren't necessarily the best, or most illuminating.