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.

Dear Beverly

I saw you today.  I saw you shift around in your seat looking anywhere but in my direction.  I know you saw me too.  I've thought about you over the years.  Do you remember the last time we ran into each other?  Do you remember what you said?  Because I sure do.

I was in the mall.  You were there with some of the old crew that I used to work with.  I used to work with you too actually.  The accident finished all of that for me.  You looked me in the face and told me that I don't have a brain injury.  I was astonished.  After all, Beverly, I was tested at the rehab by a neuropsych doc.  An expert. 

I had a personality change after my accident.  Even my taste in reading changed, when I was able to read again.  I slept a lot.  I told raunchy jokes--to everyone-- even to my eighty year old mother-in-law.  I cursed worse than I ever had before.  I had visual changes.  I have a list of things that I've been diagnosed with, all secondary to my traumatic brain injury.  

But you, in your infinite knowledge denial concluded that the experts were wrong.  You weren't there in my bedroom during the first few months when I slept for 22 hours a day.  I got up only to go to some doctor or other and to eat.  You weren't there when I insisted with tears that the classical music station be left on at night.  You weren't there the time that I smelled the non-existent chocolate chip cookies burning in the oven.  Or when the neurodoc stuck six needles in the back of my head on three separate occasions in an attempt to stop the constant headaches.  Those needles in my skull felt good.  That is how much pain I was in.  You weren't there when the first eye doctor informed the assistant "post-head trauma" and walked out of the room.  You weren't there when I looked those words up on the Internet and found out why all these things were happening to me.  You weren't there for the delivery of my TENS unit, my c-pap machine, my cane that I needed to steady me because I no longer know where I am in space.  I fall a lot.  To my right side.  The constant vertigo makes the room spin to the left. You weren't there.

I want you to know that I was hurt by your denial.  I live with my brain damage every day.  I am very glad to be alive.  During the accident I thought to myself, "This is it.  I'm dead."  I had no attachment to those words.  Time stopped.  When it started again, I was alive.  Once I escaped, I knew immediately that I no longer understood the world.  You have the luxury of denial.  I don't.

 I am not contagious Beverly.  You won't catch my brain damage if you were to stop and say hello, have a conversation.  I don't really understand that fear.  I can't relate to it.  I will not live my life in fear.  But some people have to.  I used to think that a traumatic injury was one of the worst things that could happen to a human being.  I don't anymore.  The worst thing is ignorance, living one's life in fear.  That is the worst thing.  


It's been eight years now since my accident.  We don't travel in the same circles.  I've gone on to other things.  And so have you.    So go ahead.  Ignore me when I see you in public next time.  Pretend that brain damage cannot happen to your boss, your co-worker, your son, your friend, you.  Pretend that you don't see me.  It's alright Beverly.  I understand more than I ever wanted to. 


I hope you never have to.

sapphoq healing t.b.i.

Visual Disturbances in Brain

                                                   I'm particularly proud of this one.



I've been reading Oliver Sachs' new book "Hallucinations" (on my e-reader because that's easier on my t.b.i. eyes than printed books are.  So far, it's been a real delight to me.  I was happy to discover that a few  visual disturbances similar to mine [mine are due to the t.b.i. and manifested for the first time immediately after the accident when I "saw" my entire windshield shatter-- it didn't] and the explanations for them.

I encourage all t.b.i. survivors and other folks on Brain List at Twitter to read this book if you too, like me, suffer from visual disturbances.

sapphoq healing t.b.i.

Three Dimensional Fun

The picture is of an open floor plan house that I created on Trimble© Sketch-Up.  I have the free version which Google© popularized.  You can find more of what I've been playing with at the 3-D Warehouse© .  My collection is called "do as you will."

Since my motor vehicle accident and resultant traumatic brain injury, I have all kinds of perception and ocular motor
problems.  These difficulties are not a result of any deficiency in my visual acuity.  [Visual Acuity is measured by the Snellen Eye Chart, how clearly one can see and results in a measurement of a/b e.g. 20/20, 20/30...  My visual acuity is very good.  I don't need glasses to drive].  But my eyes don't play nicely together or with my brain.  Consequently, I live with double vision and photophobia.  Almost nine years after my brain damage, I continue to work at cognitive exercises and puzzles daily.  One of the things I've started to play with is the free version of Trimble© Sketch-Up. 

Since around the middle of August, I have been creating three dimensional models of shapes, houses, other buildings, furniture (mainly coffee tables), and a few other random things almost daily.  And I've gotten better at it.  There are free videos available but I've found that I am better off experimenting with the toolbar myself and only resorting to watching part of a video if I get stuck on something that I am attempting.  I like making the models and found it a natural progression from making e-stationary and textures.  [Note: the textures on my house above are all included with the free version of Sketch-Up.  So they aren't textures that I've created].

I've found creating a ball to be more difficult than making any of the models in this sample of things I've done.  And creating 3D shapes (-- other than the rectangle-- rendering a successful model of a four sided di took me several hours) was harder for me to learn than how to chauffer edges.  (The surface of this kitchen table is chauffered, using a tool called "Follow Me).

 

 

 

 

I like challenging myself to learn new things, even stuff that forces my eyes and brain to work together.  And forcing myself to use my damaged brain to think in new or unfamiliar ways is a definite win.

sapphoq on healing t.b.i.

Milestone

I was in recovery from my addictions for many years before the car accident that rendered my brain brilliant but a bit sideways.  It is once again September and thus time for the obligatory post.  I am now thirty two years out from my addiction to drugs including but not limited to the drug alcohol.  I am slightly less than one third of that time away from the day I got my t.b.i.  I have maintained my weight loss for about a year and a half.

I made the sign.  I did not create the font.  The font came in my legal copy of a digital editing program.  I don't care if you download this tag or what you do with it.  Just don't hotlink.  Con respecto, muchas gracias.  sapphoq healing tbi

So yeah.  Happy Birthday to me!

Working on my Visual Perception Problems

My traumatic brain injury left me with some rather outstanding perception problems.  Because I have diagnosed permanent double vision in one eye, I have been treated to the sight of folks with two heads, four arms, and two torsos which extend into one set of hips and two legs casually jogging in my neighborhood.  Because I have been diagnosed with ocular-motor dysfunction and a visual accommodation disorder, objects and people appear as having ghost lines around them, especially when fatigued and my brain is too tired to block those ghost lines.  (And let's not forget the photophobia which is responsible for me limiting my driving at night to "only local and only when not tired."  And my fatigue from dealing with all of this which led me recently to switch to an e-reader which is set to make reading easier for me).  


I know that first paragraph sounds like I am whining.  But really, I am not whining.  I want to tell you about Google Sketch-Up®.  Sketch-Up® is a three-d modeling program that is available at http://sketchup.google.com/download/ as freeware.  [If someone is a professional and wants more bells and whistles, they can buy a professional version from Trimble].  I like three dimensional stuffs and I also like animation.  I've been endeavoring for some time to use DAS®, Bryce®, Blender®, and Hexagon II® and I've had no success to speak of.  [Those four programs were all available as free legal downloads a couple of months ago from their company's website.  I believe the special offer may have ended.  At any rate, I got in on it the very last day].  Those programs were too hard for me to learn at the present time.  One night I happened upon Sketch-Up® and promptly downloaded the free version.  

In short order, I found that I was able to produce rectangles, circles and 3d text.  [If you want to see a few of the things I've made, google "warehouse lovemakesafamily" to find some examples that I've uploaded to Google Warehouse®].  After watching a few free tutorial videos,  I went on to make several skyboxes, some other shapes, and a box with a chaffeured lid.  As I continue to work with my digital camera and computer art, building in Second Life®, and Google Sketch-Up® I've noted some improvement in the way that my eyes work together when I practice  my vision therapy exercises.  This improvement I must still label as "subjective" since it has yet to be confirmed by my t.b.i. eye doc. 

Sorry to the dedicated optimists who want me to say that my vision problems are totally abated, cured, or not permanent after all.  It simply ain't so.  I have to deal with my situation as it is and not engage in dreams of being "almost or exactly 100%" of who I was before my accident.  I am very fortunate to be alive.  I would have been better off-- certainly financially and in some other ways as well-- had the motor vehicle accident not happened.  But things are what they are.  I continue to deal with Briella [my still brilliant brain, just a bit sideways] on a daily basis.  When I think back to how far I've come from the early days of sleeping twenty-two hours every twenty-four, relearning on the computer how to write a complete and organized sentence, playing Tetris® because other T.B.I.ers told me it would "help" with my eye-hand coordination, and myriad discussions about the names of the seven dwarves, I smile broadly and say to myself, "Yup I done good.  Now I gotta keep striving."

sapphoq healing t.b.i.

Things About TBI-ers that Aren't True

Here is a short list of five things that are commonly assumed about people with Traumatic Brain Injuries which I have found to be inaccurate:


1).  "They don't have a sense of humor."

Actually, we do.  We have to in order to be able to survive dealing with N-typs [neuro-typicals: folks who do not have any diagnosed neurology].

We no longer 'get' why you think something is funny.  We certainly do laugh.  Just because we no longer get your jokes and you don't get ours, it does not follow that we have lost our sense of humor.

You simply haven't lived until you've spent several hours in a t.b.i. chat room attempting to remember the names of the seven dwarfs.



2).  "Any major progress to be had / Any major improvement...will occur during the first six to twelve months after the injury."

Ain't necessarily so.  Substantial improvement happens as we work for it throughout our lives.  It is highly unfortunate that the cut-off for cognitive rehab is six months.



3).  "T.B.I.-ers curse a lot."

Yes, although those of us who choose to do so can learn to keep that under control.  Hint: Don't nag us.  If you want us to do something like control our cursing, you are going to have to explain the benefits involved in inhibiting our dis-inhibitions.



4).  "T.B.I.-ers have an increased risk of dementias later in life."

That depends.  Commonality does not imply causality.  The antecedent is not necessarily the cause of, a cause of, or related to a future event.



5).  "T.B.I.-ers are notoriously self-centered."

At first, extreme self-centeredness is a requirement.  It is a survival mechanism which will recede as recovery progresses.



6).  "The brain can rewire itself."

Just not exactly the way it was before.  We used to have supersonic highways up there.  Now we have dirt roads, crossroads, and dead ends.  (The neurons that re-grow and don't manage to hook up to any other neurons are responsible for my central nervous system fine tremor).



7).  "They will be impressed if we spout off all of the big names of folks working in brainology."

Uh no.  We've probably met them, had coffee with them, met their families, attended seminars and conferences with them, served on boards with them.  We don't have the energy to be impressed by name-dropping.  And we don't have the time or the desire to stroke the false egos of folks who seem to demand that sort of thing.


sapphoq healing t.b.i.

Toxic People after a Brain Burst

My car accident was akin to a sudden bursting of my brain and subsequent rearrangement of my life into something that was very different from what I had been used to.  My recovery has been described as being "remarkable albeit slow...from a serious brain injury" by one neurodoc.  I prefer the words of the Grateful Dead.  Because it certainly has been a long strange trip.

One of the things that I struggled with after my brain injury was a renewed sense of vulnerability and indeed outright gullability.  I was fortunate that I had people around me who helped me sort through these things.  And also fortunate that I had found recovery from addiction some years before the crash.

A few months after a young woman was (allegedly) murdered during her vacation to Aruba, a radio announcer said there was a contest on a nearby ski mountain.  He said that weekend there would be cardboard box races down mountain.  The winner would get a free trip to Aruba.  I didn't realize that his words were intended to be humorous.  The chiropractor intervened in my brain-injured enthusiam and informed me that my back was in no shape to go sliding in the snow period.

It is not my intention to pick on internet trolls.  Trolls can be toxic, annoying, humorous, fun, on a mission to fulfill  a specific consciousness enlightening reason, or have no reason except perhaps for the LULZ.

There is another kind of troll that I will talk about here-- the dreaded toxic troll of real face to face life.  More polite terms range from "toxic person" to "installed our buttons" to "family members who don't get it/us" to "personality-disordered co-workers."  Toxic trolls, much like their internet counterpart, spread mischief and mayhem wherever they roam.  Toxic trolls may or may not realize that they are infested.  Those who do may not care, or they may be in a sort of talking therapy in order to study the reasons why they are toxic trolls.

Maybe you who are still working or remember working can recall a co-worker or a boss who stood out.  Said person might have gotten along with everyone in a superficial manner but was quick with the tongue to provoke those he said she said fights.  Or perhaps they destroyed records because they wanted to create work for you the unfortunate one who got promoted into their last position which they either got promoted from or were fired from.  In short, you are left to clean up their messes or deal with the fallout of their misdeeds or their words.

Or maybe you have a family troll who doesn't really lie but is wreckless with the truth.  Said family member pretends innocence.  The family troll is deceitful as a way of life, demanding that you join in the game or cutting you off from their affection and mercy.  When you try to alert other family members to the existence of the family troll, you may be met with total resistance.  Because the family troll is an established infection.  People agree to be trolled on some level.  After all, it is painful to admit that good ol' Aunt Jane is a drunken hoarder who beat on your cousins or good ol' Uncle John is a member of a drug cartel who has a meth lab in the basement.  The family troll may not be flamboyant at all.  They may also blend in the woodwork, looking to the world like an average Joe while you suffer from the toxins of their fangs.

But why do they do this?  Why do they pretend that they are perfect parents with perfect kids [who may have felt the rage of their perfect fists behind closed doors] and that the perfect kids are crazy when they mention what happened a few years later?  It is too easy to ascribe the trolliness of others to personality disorders or to hatefulness.  The truth is often complex but quite frankly, while in the clutches of trolls one only cares about getting out.  Even if we educate ourselves about the past history of the troll, it really doesn't help us avoid becoming a victim.

There is no simple solution.  From my own experience, I recommend an old book which can often be picked up for cheap at garage sales or borrowed from a local library.  That book is called, "When I Say No, I Feel Guilty" by Manual J. Smith.  Although the information on bargaining was quite good, what I found to be supremely helpful was the techniques for preventing arguments.  I read this book again after my accident and I highly recommend it.
Trolls can be brought up short using things like the-broken-record that the book talks about.  What troll can continue an argument with someone who says things like, "I understand that you want me in your clutches, however I am not taking responsibility for your life..."?

sapphoq healing tbi says: There are three kinds of people in the world-- the troll, the troll baited, and those who have been on both sides of the troll bridge.  A brain injury is not an excuse for becoming a victim nor for being the victimizer.  Read, educate yourselves, ask for help. 

sapphoq also healing tbi says: did you count the "bad words" in this post that appear in the Analyst Desktop Binder on pages 21-23 ?

http://epic.org/foia/epic-v-dhs-media-monitoring/Analyst-Desktop-Binder-REDACTED.pdf

Dear Rude Doctor at the V.A.

Hey Doctor,

Remember us?  You refused to sign for a swallowing eval for my dad.  You told us rudely that Dad was not "choking."  You said the over-the-counter cough medicine should be enough.  You were wrong.

The neurology team suggested a swallowing eval for Dad almost immediately after his appointment started.  He was in the middle of a coughing fit.  They did not argue when Dad said he was "choking" on food.  They took the time to listen to what both of us were trying to convey to them.

Dad had his swallowing eval.  Lo and behold, there is a genuine problem.  He will be following up with the E.N.T. that you also refused to authorize for a visit.

Try listening to those patients who you find to be annoying.  You just might learn something from them.

                          No Love,

                          sapphoq healing t.b.i. and her dad with dementia

Not Wanted

I went for a job try out a few months ago and although I did well enough, the boss indicated that I was not wanted, or in his words-- can't do it because of [a specific business-related decision]-- and I can accept that.  No one, absolutely no one owes me a living.  The job developer appealed to him recently by e-mail.  His response was predictably that he'd already told her he wasn't going to do that.  Again, business is business, and I get it.

Times are tough.  The economy is tougher.  Folks who don't have traumatic brain injuries are having difficulties with finding employment.  A traumatic brain injury is viewed by some percentage of employers [I don't know what percent] as expensive.  And risky.  Why should someone take a chance on me when they can get someone who is non-disabled and not [as much of] an insurance risk / workers' comp risk [as I would be]? 

Discrimination in employment is mostly illegal these days.  The reality is that if someone making a hiring decision does not want to take on an employee because s/he has a brain injury, is not straight, is not a Christian, is wearing a pentacle, is not caucasian, or [whatever reason that may be illegal to refuse to employ someone], that someone can pick another reason that is legal. 

Do I think that the boss decided not to hire me because of my brain injury or some other factor?  Nope.  Truthfully, I wouldn't care if there was a reason other than his stated reason.  I guess I am supposed to care.  I guess I am displaying political incorrectness by not caring.  But I don't care.  Folks who get fired from their jobs for illegal reasons have far more invested in their companies than I do in a place that I was at for two hours one day.

Besides the brain injury, I have some other liabilities.  I haven't worked since my car accident.  I haven't had a successful attempt at school since my car accident.  I can only work several hours a week due to my t.b.i.-related fatigue level.  I am not young anymore.

It's okay though.  Because I have a plan.  I have a specific plan with specific goals and a todo list.  And I've already started on it.

sapphoq healing t.b.i.

p.s.  I took the pic with my cheap digital camera and it is copyleft.  So go away now copyright police.

Sometimes

This is one of this month's digital art pics that I made from two of my photos.  I named it "The Grid" after thinking about information storage and broken synapses. 

Sometimes when I am full of brain fog, I am able to stop what I am doing and take the dog out for a walk in a peaceful place. 

Sometimes when I don't know what to do, I take a line from one of my favorite singers and ask myself, "What would Jimmy Buffett do?"  If I am having a problem that requires clear thought and decision-making, I ask myself, "What would a logical person do?"  And if I don't know what a logical person would do, I call up a logical person and ask them.

Sometimes I force myself to slow down, especially when my wheels are spinning and I am restless.
Sometimes I force myself to speed up, especially when I feel mokus and not wanting to move.

Sometimes blogging helps, sometimes social networking helps, sometimes nothing helps.  When nothing helps, I can sit or stand and hurt for awhile.

Sometimes things happen that are too big for me to forgive.  Not being a churched person, I don't have to offer forgiveness unless it is asked for.  And sometimes I forgive "the part of" the person "that didn't know any better."  Apathy or indifference is preferable to resentments these days.  Forgiveness is not something that can be rushed.  The rush to forgive can lead one into fresh revictimization.

Sometimes I make promises and I don't deliver.  Sometimes people and organizations make promises and they don't deliver either.  I've learned to make less promises.

Sometimes helping people get stuck in traps.  They believe in fictions instead of investigating for themselves.  Or they don't really think that we can improve much at all or have a real life.  That has to be their problem.  My responsibility is to lessen the impact of their false, limiting beliefs on anything that has to do with my life and my wishes and my dreams.

Sometimes people don't want to deal with brain damage or the changes that are wrought in us because of our brain damage.  People get scared off by what they don't understand.  Friends flee.  Potential employers hide behind excuses.  Past employers don't want us back.  I don't waste energy being good enough for anyone else these days.  I have to be good enough for me.

Sometimes people label anger as being "negative" or "bad."  I have not found this to be true.  The truth is quite different.  Muddied anger and rage and resentments can all be liabilities which we allow to dictate our thoughts and behaviors.  There is a clear anger that is a call to action.  What I have found is this: Anger is my truest friend.
 
sapphoq healing tbi

Fatigue and Fog



     I lost a bunch of weight and have kept it off for a year now.  With the weight loss, my sleep apnea receded.  Unfortunately the fog and fatigue from my fibromyalgia (which I didn't have before the accident that gave me my traumatic brain injury) remains.  So although I am no longer sleep-walking through life, I just don't have the energy that I used to.  On top of that, I have various aches or trigger points which seem to be diagnostic of the fibro.

     Unlike some unknown to me percentage of folks with fibro who treat it with prescribed drugs, I take no drugs for my fibro.  I deal with mine through a combination of exercise and extra rest.  There are days when I force myself to get up out of bed.  There are days when I suddenly have to take a nap.  And there are a few days where nothing much at all gets done.

     The brain fog I combat by the little cognitive games I find on the net-- use your search engine and type in "brain games" if you want to try them-- which are designed for kids but do force me to think in a logical manner.  I also do research for a few of my blogs as well as sudoku.  From time to time when I get stuck on a problem, I ask myself what a logical person would do.  If I cannot come up with any thoughts on that one, I call up a logical person and ask them for ideas.

     One of the things that I have learned throughout my brain injury is that there are times when I have to say "enough."  When there are events in life which yield more stress, then I have to cut back someway somehow somewhere so I don't get all twittified.  An example is that my list of daily todos has gotten shorter over necessity.  Another example is that when I feel burned out, I know that is not the time to volunteer to help other folks.  The energy just isn't there.  When I take on too much, I pay for it.  I hung up my superman cape some years ago.  After my brain injury, I kicked it to the curb.

     If I don't take care of myself, then I cannot be of service to others.  If I say yes to every little request that comes along, then I get fatigued and brain dead.  If I never say no, then my yeses won't mean anything.

     I suppose some folks learn all of this without having had a brain injury.  I was a go-getter who kept going long beyond any reasonable person would have gone.  Keeping my health as my first priority means I can no longer live the way that I used to.

sapphoq healing tbi

I Got Rhythm

    Both my mother and my father were excellent dancers.  They won dance contests together.  My mom was a wonderful tap dancer.  And Dad was an Arthur Murray Dance Instructor for a few years in his younger days.  I was naturally drawn to dancing as a child.  I wasn't good at running or kickball or basketball but I could dance.  


     My preferred dancing shoes are my sneakers.  I will dance to any kind of music.  Even now after my brain injury, I am quick to pick up new dances and put my own spin on them.


     After my brain injury, my balance [not in the technical sense of "inner ear damage," but rather more in the lay-person's sense of being able to walk around without falling into walls and things] was really pretty bad.  I fell sideways often.  The constant presence of external vertigo-- I am not dizzy, the world around me spins to the left-- did not help much at all.  I fell in my home.  I fell in the neighborhood.  I fell in the park.  I fell a lot.


     A wonderful anesthesiologist in private practice hooked me up with pool therapy.  The pool was indoors and there was a whole lot of folks like me in it.  The water had a combination of chlorine and salt in it.  There were pool therapists, pool therapist assistants, floats, music, laughter, tropical plants.  The water was kept warm as was the temperature in the pool room itself.  When I got into that pool, the pain melted away.  I was able to do the exercises given to me.  I found myself improving.  I used to spend up to two hours in the pool.  It was a relief during a time when not much was comfortable in my life.


I found a float against the wall that was v-shaped.  I asked what was done with it and soon I began to incorporate it into my exercises.  I would sit on the float and deliberately induce the vertigo to speed up.  I did this by spinning myself back and forth randomly in place on the float.  I learned to stick to my seat, not fall off.  After pool therapy was done, the neurologist remarked that my balance [in the lay-person's sense of the word I am sure] was much improved.  I knew this to be true because I was less bruised from falling.  I began to dance again.  At first with the cane, but it was definitely dancing.


     The other thing that happened immediately after my injury is that I began to insist that my husband not turn off the classical music when he was ready to sleep.  He wanted to.  I didn't want him to.  When he tried to turn it off, I cried.  After a few nights, he gave up and the music stayed on all night for the next two years.  


     Those of you who follow my sapphoq reviews blog may be aware that I love the author Oliver Sachs.  His book Musicophilia talks about the connection between music and the brain. [ http://www.oliversacks.com/books/musicophilia/ ].  The University of Western Ontario plans to carry out more research on the connection between music and movement.
[ http://communications.uwo.ca/western_news/stories/2012/January/finding_ties_between_music_the_brain_and_how_we_move.html ].


     In some of the t.b.i. support groups and functions that I've attended I've heard much talk of a religious or spiritual nature and how that sort of thing has helped other t.b.i. survivors.  Being an atheist and happily unchurched, I cannot add my voice to the chorus.  But what I can attest to is that music has been a very active and necessary part of my own recovery.


sapphoq healing t.b.i. 


     






http://communications.uwo.ca/western_news/stories/2012/January/finding_ties_between_music_the_brain_and_how_we_move.html

So Here's the Deal

Censorship stinks.  To the DMCA, SOPA, PIPA and the latest attempts by some politicians who appear to me to be idiotic in this latest attempt to police the internet, no love.   You fry my brain.     sapphoq