This is spike's brain

This is my post- t.b.i. brain.  As I've said before in these pages, her name is Briella.  Still brilliant, just a bit sideways.

My brain is a bit different now.  I've gotten used to her glitches.  I adjust when the whirley-gigs fly out of rhythm.  I no longer run after the scattered pieces of random chaos.  The patterns that are my thoughts are snatches of memory and pieces of dreams.

It takes courage to dream new dreams.  I don't have too much of that yet.  I've only scratched the surface of possibilities.

sapphoq healing t.b.i., brain damage, attitudes and a bunch of other stuff 

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.

A.B.C. Memories Meme

A. "Does anyone here have an aardvark?..."
B. Batman bangs one summer, cut by my mother. I thought they rocked.
C. Celantano's, a store on Roosevelt Avenue.
D. I used to help Miss Davis in the school library. She had her left leg amputated cuz of cancer.
I was saddened by her death years later.
E. "Everything is beautiful in its' own way..."

F. I swam "like a fish" and I still do.
G. My friend Peggy H. took me to see the play "Grease" in New York City.
H. Life magazine did a spread on the play "Boys in the Band." It was my first exposure to
information on homosexual men and I was fascinated.
I. "i before e except after c."
J. Jesus-tripping. My friend Nancy T. and I drinking Moygan David wine and eating matzas
in a Bloomfield park.

K. I liked bat kites.
L. "L is for the way you look at me..."
M. The first time I saw a mouse in the kitchen, I stood on a chair.
N. The word 'nigger' was socially acceptable in the house I grew up with. I learned better in
seventh grade with the advent of two black classmates and I got to be close friends with
one of them. Thank-you Ann P!
O. I smoked oregano for a whole summer, thinking it was pot.

P. An aunt and uncle had a poodle named Pepe. He liked to do tricks.
Q. I was a founding member of the short-lived Queer Nation in Albany New York.
R. Rehabilitation assumes that I was habilitated in the first place. I wasn't.
S. "Wednesday is Prince Spaghetti Day." It was Ronzoni in our household though.
T. Another uncle was into model trains. He had a set-up in his basement with a miniature
village and everything.

U. From first through twelfth grade, I went to schools that required uniforms.
V. Nancy T. joined the Air Force and was stationed at Valdosta, Georgia.
W. My mother used to tell me, "The world doesn't revolve around you." Still, a modicum of
attention or interest from her directed my way would have been nice.
X. "X marks the spot." I was quite taken by the book "Treasure Island" and by all things pirate
when I was in grade school.
Y. I used to hate the color yellow.

Z. I remember watching zebras running in Africa on Mutual of Omaha's "Wild Kingdom."

spike: sapphoq healing t.b.i.

DISCONNECTED MEMORIES 2/28/07

My memory has been tested and rated as rather superior in spite of my t.b.i. "Superior even to people without brain injuries," the nice neuropsych doc told me. "At the 99th percentile superior."

The test showed that I could recite 9 and almost 10 numbers forwards and backwards-- meaning I suppose that I remain wonderfully equipped to remember phone numbers. I was never told if that translates somehow into a magical ability to remember who called me this morning.

Remembering what I had for breakfast this morning is easy because I eat the same thing for breakfast every morning. Yet, some of my memories fall into the category of, "I remember that I remembered doing this. I no longer have the actual memory itself. But I do have the memory of remembering."

There are whole sections of my life that have been wiped. I have found those memories gradually seeping back in, like a steady leak of water. Drops of water that hit me at random intervals instead of the pot placed on the floor for that purpose. Those I record in one of the other blogs for posterity or hilarity.

I was with a good friend today who asked me if I remember her doing such-and-such. "Oh, you are the one who did that?" I replied. I sorted through and attached that particular disconnected memory to my friend. I remembered details of having been told about the such-and-such, but not who had done them. I filed her name away. Now there is a storage part of Briella* that contains the following: It was this here good friend who did the such-and-such that I remember having been told about. Another link in the mess of necklaces partially restored. Still no memory of the friend telling me about it. But a name to go with one of the such-and-suches floating around in the cerebral atmosphere.

Interior fragmented landscape not withstanding, I am not complaining. Briella* is rather cheeky and as I reach up mentally to give her a hug, she slaps my hand away and says in stern reproach: I don't like being fondled by strangers.

"Briella* it's me," I attempt to reassure her. She walks away muttering under her breath words that I dare not write for English class or in any blog.

sapphoq healing tbi

*Briella is my post-t.b.i. brain-- brilliant, just a bit sideways.