Just Saying

People who live in glass houses and are getting stones thrown at them may want to think about moving.  Or install safety glass.  Or something.  Just Saying.

                                        I made it via a modeling program.  I tubed it.  If for some reason
                                       you want to save it to your harddrive and use it or alter it in any way,
                                             go ahead.  Though I don't know why you would want to. 






  If you hang out with fleas, you get a new dog.  Just Saying.

 

   Yeah, I took the pics on my cheap digital camera and then

       I made these too.  If you want them, go ahead. 

Just don't claim them as yours.

 

Living with brain damage is like juggling dots.  I never quite know if they are going up or down or started up or stopped.  Just Saying.

 

                                Yeah, I made this too.  If you want the dots, take 'em. 





No matter how "good it is" or how "bad it is," it's wonderful to be alive.  We can do stuff after a traumatic brain injury.  [I saved up some money and went cross country alone].  We can learn stuff.  [I learned how to 'shop' my pictures and how to do a few things on a 3d modeling program after mine].  We can be people in the midst of people.  We can work for change.  We can create meaning.  We can love.  Just Saying.

                                  sapphoq healing t.b.i.

 

 

Compensation

Compensation is a healthy acknowledgement that a certain limitation or weakness does ipso facto exist and therefore we work around that limitation or weakness.  The unfortunate reality of brain damage-- traumatic brain injury in politer society-- is that some things will not get better, improve, or disappear no matter how much of an effort we put into making it so.  Some things do improve.  And some things don't.

We don't like to hear those words.  The trouble with the phrase "permanent damage" is inherent in both the word "permanent" and in the word "damage."  Permanent implies permeance.  In spite of my determination and my best efforts, the double vision in my left eye is permanent.  In spite of my determination and my best efforts, my brain may improve in some areas of functioning however she [I named her Briella: still brilliant, just a bit sideways now is all] will never ever be the same as or similar to my pre-accident brain.



Here are some things that I am sick of hearing in no particular order:

The brain re-wires itself. 
Yes, but not in the same way.  Where we used to have freeways we now have dirt roads and dead ends.  The dead ends are when regenerating dendrites don't find another one to hook up with.  I have a central nervous system tremor as a result of that.

There is nothing wrong with you. 
 I hope you never have to live through anything like this.  Your denial is a luxury that can kill me.  Bunches of professionals have told me exactly "what is wrong" with me.  I have a list of diagnoses now.  Bottom line is that most of the things on the list are a complication of my brain damage.

You had those difficulties before. 
My brain damage made a few of my pre-existing difficulties worse and one pre-existing difficulty easier.  It's easier for me to throw stuff out now because I don't remember where or when I got it or why I wanted it.  Since when did you get a PhD in Neurology or something related?

I know what you mean.  Sometimes I can't ___________ either.
Jealous much?  You really do not know what I mean.  I have these difficulties day after day, every day.  Your "sometimes" is meaningless to me.  Almost nothing is automatic for me now.  Wrap your undamaged brain around that one.

Yoga [or ______________ ] will fix it.
No, it will not.  The stiffness that I have is from cerebellar damage.  Look it up.  There is no magic pill.  There is no magic drug.  There is no magic guru.  There is no magic exercise.  There is no magic anything.



But some things have gotten better.  I have learned to tell people to hang on a minute while I am engaged in a task, to rest on demand, to challenge myself, to keep moving, to write in meaningful, grammatical constructions called sentences, to ask my friend "Who is that?"

I have learned to remember to look to the left at a stop sign.  I affixed a brightly colored sticker to the windshield at the spot that I kept neglecting to look at.  Now, remembering to look there is almost automatic.  For the first two years, it was not.

I have learned to curtail my night driving in the name of safety and photophobia.

I have learned to substitute a similar sounding word when I cannot make my mouth say the word that I want to say.  Or when I cannot make my brain retrieve the word that I do want.

I have learned to curse less.  I do not substitute words like "heck" or "darn" for the words that I want to say.  I can stop myself almost all of the time now from cursing.

I have learned to ask for help when I need it.

And I have learned to compensate for the weaknesses that I have due to my brain damage.  A sticker on the windshield is a compensation.  Not driving at night is a compensation.  Word substitution is a compensation.  Stopping myself instead of cursing is a compensation.  Asking for help is a compensation.



Here are a few things that do not work for me:

Modeling "appropriate" behavior and expecting me to catch on does not work.  Unless you point it out to me with words, I will not get what you are doing.  Unless I decide that I want to change something [like my cursing], I will tell you where you can stick your "appropriate" behavior.

Demanding that I do stuff that I cannot do safely does not work.  You can expect me to shovel the snow all that you want to.  Believe me, I want to help you shovel the snow.  I have spinal damage.  I can move snow around with my old beat-up car.  I cannot safely shovel show.  Hire someone to do it.  Get a plow.  Use the snowblower.  Piss on it.  Whatever.  I will not shovel the snow.  I have been advised of my physical limitations.  That I cannot safely shovel the snow should not be a newsflash.  I am not interested in what you think about this.  It's called self-preservation.

Not telling me why you are angry or exasperated with me or with something I am doing does not work.  It's a guarantee that I don't know why you are exasperated with me.  Sometimes I may not even be aware that you are exasperated.  Saying, "I'm sick of this," and ending a friendship and not telling me what you are sick of does not offer me any feedback whatsoever.  Expecting me to be more than civil to you when you run into me in a public place several years later is unreasonable.  I've been through too much to be interested in playing that particular kind of game.  I've lost better friends than you due to the aftermath of my brain damage.  What's one more?

Expecting me to believe in your belief system does not work.  Preaching at me will cause me to tune you out.  Telling me that life is meaningless without your particular flavor of philosophy or "spirituality" just makes me say, "Huh?"  Expounding on the false notion that there is no morality without your particular god will cause laughter and merriment.  And you are going to argue a finer point of theology or recovery or even neurology with me, please construct a logical argument without any cognitive fallacies.  I don't have time to waste on mental masturbation.

And finally, trolling without any real skillz does not work.  If you are a troll, then be an epic troll.  If you can't hang with the 4chan crowd, then don't co-opt the vocabulary.



I have brain damage.  I am not brain dead.  I continue to do brain game type stuff and visual training and physical therapy exercises.  I know who I am and I know what I am.  I keep striving in spite of.  There is no room in my life for the willfully ignorant.  I have learned how to compensate for many of my difficulties.  If you aren't going to help me, then get out of my way.

sapphoq on healing t.b.i.

Lazy

I think I've talked about this one before.  But I will talk about it again anyways.

I used to go to a t.b.i. support group on Saturdays run by one of us.  We used to talk about stuff that got in our way and how to work around that stuff.

One Saturday [or maybe more than one Saturday] I was talking about my laziness.  The survivor-facilitator encouraged me to think of this as something that came out of my brain damage i.e. my messed up neurology.  I rejected this and still do reject this thinking.  Here's why.

If I claim that something is organic and arising from my traumatic brain injury, then I am saying that it cannot be fixed.  That I have to work around it.  I refuse to believe this of my laziness.

I am willing to admit that perhaps the brain injury made my laziness worse, or makes it harder to deal with.  I know I have some problems with initiation now.  That I can identify as being from the brain damage.  I know that I also have brain-related fatigue and that particular ailment called "fibro" as evidenced by all of the trigger points that I have.  Fine.  But laziness as a function of my brain damage? -- no.

My laziness is mine.  I own it.  You will not deprive me of it.  When I say that I am lazy and not "my brain damage causes me to be inert," I am claiming some hope for myself that I can change this.  So yeah, I am lazy.

What do I mean when I say I am lazy? I am lazy about doing housework, throwing out stuff, organizing my belongings. And not lazy? I am not lazy about walking the dog, doing laundry, doing anything on the computer.  In other words, if I like it I will do it.  If it is not interesting, I won't.

I've tried to make charts and todo lists of stuff to do everyday-- like organizing, throwing away papers, and some form of housework.  The end result is that I can make wonderful charts.  I just cannot follow them.  [This may be related to my inability to follow a pattern for crochet but I can make my own patterns].  So the chart thing just isn't working for me at this time.  I've tried "attaching emotion" to the stuff I want to get done, like playing music during housework [suggested in the t.b.i. support group] but I would forget to play the music.  The end result was I didn't get much of any housework done.

I've read in a few places that developing a new habit takes thirty days or something.  The new approach is to take each thing that I want to do and endeavor to do it every weekday.  I've actually had better success with that. 

I am also tapping into my determination.  That same determination that I used in order to learn how to rewrite understandable sentences is still available to me today.  That same determination that drives me to research a story or event or organization is part of me.  That same determination that caused the head of investigations at my own job to refer to me as a bulldog did not die during my car accident.  I know I am determined.  Choosing to use my determination to combat my laziness is working for me.  And that is what I am doing.

Things may be more difficult for me to accomplish at times due to complications from my brain injury.  I do have problems with initiation, organization, and fatigue.  I also have this determination stuff.  If I believe that I am more than my problems, then I can do more than my problems.  I do not have to live like an blob void of all adult responsibility, only doing stuff that I want to do and ignoring the rest.  This is not a fantasy land.  Houses get dirty and disorganized when not taken care of.  Even if I was to hire a housekeeper [again-- I had one for awhile a few summers ago when things were bad], there is still stuff that I have to do.

So I am using my determination in order to conquer my laziness.  And screw the rest.

sapphoq healing t.b.i.

Memory is Like That

Memory is Like That

Speckles of color. Colors.
The rain. A road. Patterns.
Memory is like that.

A drifting. A lover.
A child who never was.
Alone. Thriving. Lost.

Who?
What?
How?
When?
Where?
Why?

Memory is contrary.
Memory refuses to answer those questions.
Memory stomps her feet and screams, "Aw feck you!"
In loud guttural gasps and spurts
Memory laughs and laughs
and will not care if you stand her in a corner
until she behaves.  She does it for the LULZ.
Memory is like that.

And Memory is like this.
A softness. Fingers. A hand.
A foot. A body. Fur, skin, nails.
Faster and faster she flies
up, up, up until the bubble bursts
and she dies.

She dies laughing.
Memory is like that.

Memory is all of those things.
Memory is none of those things.
Memory is everything and nothing and flapping
in the breeze.

In the wind, in the storm,
the tumult thunder takes a breath.
Dead babies drown and a wolf howls.
Memory runs away because she is like that.

She breaks hearts and remains long after
the brain has failed in the quest for something else,
anything but this. This emptiness. This nothing.
Empty spaces. Zero words. Cellular death.

Memory.  Is.  Like.  That.

My dad and I in another time and space before his brain began to fail and before mine became what it is today.

Is it any wonder that the learn-ed people of the world cannot conceive of a thinking sentient being that does not use words?  Most folks think in words and cannot imagine a thought without words.  A few folks have bravely admitted to thinking in pictures, patterns or in some combination of stuff that is not the average way of thinking.  "We" think of people with impaired memory-- short-term, working, or long-term-- as somehow being less than or damaged or Other.  "We" think that the demented people who are our parents and someday may be "us" as belonging to some other world or place.  "We" talk about normies as if they are the alien species or sub-species.  Even the use of the word "We" in quotations fails at finding a common denominator.  Just as the "We" in quotations shifts and changes within the fluidity of words surrounding it, so does the we that we have become. 


To some folks, we the brain-injured are an exercise in abnormal neurology.  To others, interesting or not so interesting test subjects.  To still others, we are tragedies or failures.  We are the clients of the professional helpers-- recalcitrant, agonizing, frustrating, ungrateful.  Or co-operative, dull, easy, dependent.  What is the truth in the characterizations?

Early on in my own brain injury, I came to understand that we the brain-injured are not thought to have a cohesive sense of humor.  A lie.  We the brain-injured are fakes, looking to excuse ourselves from working full-time and having to grapple with adult responsibilities.  A lie, a dastardly lie.  We the brain-injured are daredevils who partially brought this upon ourselves by taking too many chances.  An over-simplification and therefore a lie.  We the brain-injured are self-centered and egotistical.  A partial lie.  In the wreckage of our former worlds, we become more self-centered than we used to be as a defense against the bombshells hurled at us by organizations and institutions that were put into place by those among us who cannot possibly conceive that we the brain-injured are who we are.  No, that's a partial lie too.  

Again.  In the wreckage of our former lives, we become more self-centered than we used to be as a survival mechanism.  Yes, true that.  This self-centeredness, or selfishness, I have seen exhibited in response to early dementias as well as in the brutal aftermath of brain insults from other causes.  When the bombshells are exploding around us, we are engaged in survival.  Survival behavior is by necessity selfish.  Suddenly, we ain't what we used to be.  Our world blew up.  

When my dad began his descent into dementia, he struggled with asking for help.  As my beloved aunt gets older, she too struggles with asking for help.  To ask for help is to admit a weakness, to give voice to the sentiment that we cannot do this, we can no longer do this, this is now too hard or too complex or too difficult.  There is that fear-- justified in my opinion-- that by our admission to needing help, we will become victims of the unscrupulous around us.  Dad learned to ask for help although trusting is still difficult for him.  My aunt has learned who she can trust to give her the help she wants in the manner that she wishes it.  And I?

I have learned and re-learned when to ask for help, when to take a break, when to persevere at a difficult task.  It is a crooked balance beam.  But I keep at it.  I am the most determined person you will ever meet.  I had to learn again, after my motor vehicle accident, how to write understandable sentences.  I learned this via the Internet.  I didn't learn this through clinical intervention i.e. through rehab.  

Brain damage is expensive.  The insurance companies were fighting over who was going to pay for this.  In the end, I was the one who paid.  I never got rehab.  One place turned me down flat when I offered to pay for services with cash.  They were willing to help me if the insurance problem ever straightened itself out.  Consequently, it was me and the computer for a long time.  I learned what it means to be in charge of my own rehab.

I cannot speak for all people who have sustained brain damage through car accidents or strokes or dementias.  I cannot speak for anyone but my own self.  Here's something that I do know.  We do not lose our individuality because of brain damage.  We only lose that when we yield to the majority.  The majority can never speak to the needs, wishes, and desires of any minority.  Yes, I have brain damage.  I will not yield to the expert opinions that dictate how we should behave.

I have impairments in my memory.  I am not always grateful.  I am liable to throw the crumbs back at you and tell you to keep them.  I do not believe that "you" know what's best for me because you are degreed or work with other people like me or are considered to be an expert in your field.  I curse and I will not quit wearing white socks.  I challenge your knowledge.  I defy your odds.  I am a difficult patient.  I do not define my self by my brain injury.  My injured brain is only a part of who I am.  I know who I am.  Atheist. Bisexual.  Radical.  Writer.  Blogger.  Thinker.  Comical.  Sarcastic. Determined.  Pissed off.  Angry.  Fatigued.  Prolific but  lazy. Aching.  Militant.  Loquacious.  Artistic.  Lover of nature. Traveler.  Coffee-drinker.  Highly Distractible.  Multi-faceted.  Not terribly respectful because I know that respect has to be earned.  Anything more than the basic respect that should be afforded to all human beings regardless of circumstances, disability status, or religious inclinations must be earned.  Those professionals that have earned my respect are human beings who do not allow themselves to forget that all of us are human beings underneath the trappings.

I have no use for religious reflexions on divine gifts or lessons for the learning or wholesale condemnations.  I have no use for being told what I cannot do.  I have no use for the imaginations of the unimaginative.  Yes, I have brain damage.  Yes, I have myriad complications from my traumatic brain injury.  And yes, just as my dad would have been far better off had he never gotten dementia, I would have been far better off had I never had my car slammed into a house leaving a hole in the cement foundation.  But these are the cards I have been dealt.  It's up to me what I do with these particular cards.  So take your sentiments about how blessed we are because of our fractured brain someplace else.  I have no room for that sentiment in my daily struggles.  Likewise your suppose-eds about Higher Powers, Lower Powers, Dead Powers, Living Powers, Spirits, Seances, Cruci-fictions.   

Speak to me of pain.  Joy.  Pileated woodpeckers.  Dogs and cats and frogs and dirt.  San Diego.  Arizona.  Rocks.  Cliffs.  Uncharted trails.  Forests.  The Mob.  Oliver Sachs.  Jeremy Crow.  Mercedes Lackey.  Elizabeth Moon.  New Order.  Jimmy Buffett.  Music.  Writing.  Coding.  Brain Damage, if you must.  Hope.  Books.  Accidents.  Deaths.  Shootings.  Abuse.  Justice.  Injustice.  Recovery.  Grassroots.  Origins.  Evolution.  The Net.  Mother Ocean.  Pharoah Lake.  Queer Nation, Act-Up, Anonymous.  Earthquakes.  Computers.  Memory.  Dance.  Silence.  Community.  Being.  Because this is about community.  This is about finding our lives again, even if they have been altered by neurology.  This is about taking chances and truth and guts.

In coming together with others who have decided to fight a battle that I am interested in fighting, we have to find a common ground.  In spite of my brain damage, we do find that common ground.  That rhythm.  That zest.  And so we tango to the music.  Because tangos are sexy.  Because movement is being.  Because we want to know that we have made a difference.  That we will continue to make a difference.  We become something together that is stronger than any one of us alone.  This is grace.


When my life ebbs and my own memory fails, even after my brain fractures itself into a myriad of lesions, I hope that I will know that I have made a difference.  That even with my messed up memory processes and visual disturbances and defensiveness, I have made a difference.  Herein is the Why.  Because I have disconnected memories and a blown up world, because I have written Memory Is Like That to my own messed up and fractured memory.  Because. I. Am. Like. That. Too. 

sapphoq healing t.b.i.

Prosopagnosia: Face Blindness

Prosopagnosia or Face Blindness: I have it.  I took the test-- a series of on-line tests via faceblind.org / Harvard University.  I did not do well.  I did not even recognize Steven Colbert's face and I watch his show several nights a week.  And have been for several years.

I recognize my own face.  [Some folks have difficulty with their own faces].  And that of my housemate, folks I see regularly if they are standing right in front of me, pictures of people I know.  [Again, some folks have difficulty with all of the above].  If someone tries describing a person to me that they claim that I know-- well, that doesn't work too well at all-- I usually tell them to just assume that I know who they are talking about and carry on with their story.  I cannot pair up some faces with names.  The tests: I did really badly on the tests.  I signed up to be contacted about the research study being done over at Harvard.  

Some faceblindness is the kind that someone might always have had.  Some can be the result of trauma.  I believe mine is a result of my t.b.i.  Some can be the result of strokes or other neuro-events.

I recognize faces by social settings-- doctors in offices for example, by hair styles, by clothing, by skin tone.  Change your hair or your clothes or appear somewhere that I don't normally see you becomes anyone's guess as to whether I will recognize you or not.

I am still processing this latest bit of information.  Perhaps I will have more to say later.

Below are some links, including the links to the tests if anyone is interested.

sapphoq healing t.b.i.


http://www.testmybrain.org/

http://www.faceblind.org/

http://harvardmagazine.com/2012/03/the-traumatized-brain

http://www.dailygalaxy.com/my_weblog/2009/06/the-harvard-test-my-brain-quiz.html

http://drdianehamilton.wordpress.com/2010/09/11/test-your-brain-and-facial-recognition-interesting-and-fun/

http://www.cbsnews.com/8301-18560_162-57399118/face-blindness-when-everyone-is-a-stranger/

http://www.radiolab.org/blogs/radiolab-blog/2010/jun/15/strangers-in-the-mirror/

http://science.howstuffworks.com/environmental/life/inside-the-mind/human-brain/face-blind.htm

http://www.npr.org/2010/11/13/131267727/living-with-face-blindness-who-are-you-again

Random Chaotic Style

Early on after my accident I slept a lot.  Twenty two hours a day.  Barely up for meals and doctor appointments.  I wasn't able to walk the dog so I hired a neighborhood kid for that.  Housework was impossible.

Let me back up there.  I wasn't real talented at things like organization or wanting to do the housework before the accident.  After the accident that got much worse.  I'm still endeavoring to dig myself out even now.

Even now, housework is a struggle.  [More than it ought to be, I tell myself].  And add this random chaotic style-- which is the way I approach everything these days-- well, the house needs help.  I had a housekeeper for awhile a couple of years back.  It helped to have someone do some of the extras.  I was able to go through stuff and toss it with someone else around.

When Dad came to live with us a few times before his dementia ultimately dictated that placement into an adult supervised living house was best, at that time he was able to clean.  His organization skills were somewhat intact in spite of his dementia.  There was a weekday schedule.  I got up.  Walked the dog.  Then we cleaned.  Then we went to the diner for coffee.  Then we came back.  I walked the dog.  Dad would fall asleep in the living room chair.  I walked the dog.  I did other stuff around the house.  Then was dinner, television, sleep.  The routine was good for me.  With someone else there and working along side of me, I could find the initiative to pick up the house.  It still was not a terribly organized house, but it was better than it is now.

When I do chores, my high distractibility kicks in.  I may start off by clearing the dining room table to wax it but in the middle of moving stuff and putting things away, I wind up doing something else like cleaning out the closet.  Random chaotic.  When I don't do chores, nothing in the world can get me to move.  In one of the t.b.i. support groups that I used to attend, I learned that the inability to get things started in the absense of untreated depression or other conditions was related to impaired executive functioning of the brain.  I figured I was a bit lazy.  Truthfully I still do.  Or, even if my executive functions are a bit impaired, the end result certainly looks more like "lazy" than like brain damage.  I know I've said this before.  I can work with "lazy."  If I call it "lazy," that means I can fix it or do something to get myself to be a bit more active.  If I call it "brain damage" or "executive dysfunction," altering my behavior becomes a bit tougher. 

Dad is currently afflicted with a monothematic delusion.  He thinks the postage stamps are not postage stamps.  "Are you sure?" he asks me.  He remains unconvinced by my explanations of forever stamps.  Even the stamps he has had since July with the American flag on them are imposters.  "They look smaller than real stamps," he tells me.  "Really," I tell him, "Those are the postage stamps."  Dad shrugs and mutters, "We'll see if any of this mail comes back."  I know this is from the dementia.  It's neurological, organic, not able to be fixed or altered.  The best I can do is reassure him that the stamps are indeed stamps.  If he ever gets really upset about this, I will have to take the mail and tell him I will post it at the post office.  At least he doesn't think I am an imposter.  That would be far worse.

Dad has a monothematic delusion from his dementia.  Not fixable.  I have mild executive dysfunction, amotivational syndrome, whatever.  Not fixable.  I am lazy.  Ah.  I can work with that. 

At first, I blamed all of my problems on my brain injury.  From what I've casually observed, this appears to be common in the early stages of learning how to deal with a damaged brain.  Now I can see that some percentage of problems were always there even pre-injury, some percentage of problems were always there but the t.b.i. made them worse, some percentage of the problems are brand new since the t.b.i. and related to my screwed-up neurology. 

I don't want to make excuses for not living up to my responsibilities.  So I won't.  Today in this blog post.  I am lazy.  Oh sure, I got brain damage, numbing fatigue, a host of complications from the t.b.i.  I'm not going to let that stop me.  Okay, things are not automatic anymore.  Okay, motivating myself is difficult.  Okay, some of this neurological, screwed up, organic.  So what?  I will find a way, or several ways, to work with my random chaotic style in order to push my laziness to the side.  To clean a house.  To organize.  To put things in their place.

There is one thing that is really good.  One thing that is a beacon of hope.  Since I no longer remember where I got all this stuff from, or why I wanted it, it's easier now than it ever was for me to throw away what is too battered for anyone else to use.  And easier to give stuff away to the local thrift shops.  I carted a sweater across country-- twice-- years ago, and I didn't even like the sweater.  At least that sort of thing is not what I am struggling with these days.  I have the ability to let go of stuff nowadays.  As a direct result of my brain injury, that is easier.  I certainly would have been better off had my car accident never happened.  But it has happened.  So I have to work with what I got in whatever way that I can work with it.

If I want something different I have to do something different.  Doing more of what doesn't work just doesn't work.  Brain damage or not, I am capable of learning and of changing. 

sapphoq healing t.b.i wanders off to clean the sink


I made the signs myself.  They are just words.  As such you are free to download them off of the page and do whatever with them if for some reason you want to.  Just no hot-linking.  Thanks muches.

 

Multi-tasking

Continuing the trend of including vids that I've liked, here is one from TED:





After my neuropsych testing, dude told me that my multi-tasking was dead-- actually he said that it has "sh*t the bed and it ain't coming back" quote unquote-- and I understood that to be true.

Now this guy comes along celebrating monotasking.  And I'm now saying to myself, "Yeah.  I can get behind this one."

So:

Monotasking Pride                                                                                          is born.

sapphoq healing t.b.i.