When I Die

When I die-- because I will-- I will not have any consciousness.  My tired damaged brain will be released into nothingness.  I will cease to exist.  I will simply not be.

When I die, I do not want a fancy funeral with flowers and fakery and make-up and clothing that I never would have worn when I was among the living.  None of this will matter to me after I am dead.  Still, there is something about The Great Lie that has become the burial industry that repulses me.  I don't want people to contribute to it on my behalf after I am dead.

When I die, after the transplant teams are done harvesting whatever organs-- including but not limited to my skin-- that are useful; and the medical students have done practicing how to do an autopsy or learning anatomy from my corpse, I want to be thrown into the general heap of discarded hulls and given a general burning.  If any of the crazy ones loved ones in my family insist on anything more, then I want to be cremated and my ashes either scattered in Mother Ocean as fish food or buried in the woods that I love with no markers.

After I am dead, I do not want some priest or minister or rabbi or religious folk whose congregation I have never attended extol my supposed virtues with words better wasted on others.  After I am dead, if my body must be dressed before burning then some old clothes will do just fine.  Better yet, burn me naked.  Take the clothes you would have dressed me in and donate them to someone in need of them.  Take the flowers you would have surrounded my remains with and give them to someone you love who is still alive.  Take the money you would have spent on The Great Lie and use it for something that matters.  Take your memories of what I have stood for in this life and use them to propel yourself into social action of some sort or another.

After I am dead, you will still be living.  So live, remember, don't look back.

sapphoq healing t.b.i.

It's My Brain, Stupid

You should be satisfied.  You should be satisfied by the crumbs we offer you as we hide behind our desks eating cake.
FUTA.

You should be mesmerized.  You should be mesmerized by the amount of names of big wigs in the field that we toss around in your presence as we engage in mental masturbation in public with no shame.
Unenthusiastic. 

You should be enthusiastic.  You should be enthusiastic about cleaning up kitten shit and then being tested to see if you can remember to initial a place in the notebook where you gave the sick kitten medicine.
Checking my totem.

You should be grateful.  You should be grateful when we offer to get you a ripoff "job" assembling products at home.
Krite.

You should be motivated.  You should be motivated by the idea of listening to a thousand call-in center conversations and transferring them into text.
Enraged. 

You should be awestruck.  You should be awestruck  because we were staff at a community residence for individuals with a traumatic brain injury.
Disgusted.



sapphoq healing traumatic brain injury says: This is Briella.  Who is Briella, you say?  It's my brain, stupid.  But not just and only my fractured brain.  My fractured dreams.  My fractured life.  This is my obsession.  Not to start over again at the bottom rung with your  sour vomitus directions about how to engage in faux-normality.  Your goals are not my goals.  If you want me to invest in something, then give me something to invest in.  If you are not going to help me, then don't hinder me.  Just get out of my way.   I am done with your platitudes.  Your handouts are poisonous.  This is my time to shine.  Get off of the stage.




     

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.

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.

Growing Back

shout outs to Dr. Holub, Peter Kahrman and his Life Growth workshops, and Vitolo Rossini

Once again, last night I found myself explaining in layperson's term basic brain factoids to a friend. She proposed the tired misinformation that "the wires of the brain grow back-- and better than ever." I explained that if there is axon shearing, the axons cannot regenerate. When the axons are not sheared, the dendrites can re-connect but there are some difficulties inherent in the process.

Using my arms to represent the axons and fingers to represent the dendrites, I demonstrated that some of the 'wires' reconnect correctly, some reconnect in the wrong places, and a few grow back but do not reconnect at all. I told her about cognitive slowing-- traveling along dirt roads rather than on the expressways. I also told her that when dendrites do not reconnect, there is the resultant central nervous system tremor (something which I myself do have). Thus, one of the side effects of healing is the presence and worsening of a symptom (the tremor) which some of us did not have before. "Well, I'm optimistic," the friend said. "I'm hopeful."

I am also hopeful. Yet my hope lays in a different direction. I am enough of a realist to know that my own brain damage (the words "brain injury" is a nicer way to describe these profound life-altering changes in brain functioning) will not revert to its' former state of affairs and be good as new. My hope is to be able to deal with what is in an effective loving manner. Of course I keep exercising my brain daily in order to access as much improvement as I can. Yet I also continue to employ workarounds for those times when my damaged brain clamps down on my ability to function.

When well-meaning people say, "Oh but the brain rewires itself," I feel discounted. That is not their intention perhaps, but that is my first reaction. When people say, "Oh but I have [insert troublesome symptom] too," I feel that my own experience with brain damage is being trivialized. There is something within us all perhaps that wishes to normalize the traumatic. It is not a kindness to paint masterpieces of normalcy with the brush strokes of my pain. Because what happened within my brain and within the brains of all survivors of brain injury, is not within the realms of average mundane existence.

I have a fairly clear picture of where my brain damage is and the resultant challenges based on medical testing. I have the results of my M.R.I. in an oversized brown envelope at home. I also have the results of my neuropsych testing done at a brain and spinal cord injury rehabilitation hospital. The M.R.I. films and the final report written by a neuropsych demonstrate in black and white the stark reality of my brain injury.

People in recovery from drug addiction (including the drug alcohol) often claim that they have brain damage in an off-handed way. Years ago, I too had also made this claim in my own ignorance. Indeed, what triggered last night's conversation was a dear friend joking about not having two brain cells left to rub together. I remember what my early recovery from the bondage of addiction was like. When comparing the state of my being then to the state of my being after my motor vehicle accident, I find a vast difference between my former unfounded claims and my present reality. Personally, I would prefer that people in recovery and others quit trying to join our ranks unless they have films and neuropsych reports to back their claims.

Brain damage is a profound alteration in functioning imposed by structural changes. The next time you run into a former co-worker at the mall who did not return to work after her accident and she tells you she has a brain injury now, please endeavor to cast aside your own denial instead of discounting the results of her professional testing. If a survivor of a traumatic brain injury shares his pain over recurring troublesome symptoms, please do not attempt to join our ranks with your claim that you "have that too." And people in recovery, please stop saying that you have damaged your brain unless you have medical evidence to back up your claims.

For myself, I strive to keep addressing my defensiveness and to provide basic brain education where possible in a caring and respectful way. Some of you may know of my involvement with the virtual world of Second Life (registered copyright of Linden Labs). I have a role model there, a young man who is himself a t.b.i. survivor. Vito also uses opportunities as they come up in his daily encounters to educate the masses. I've seen Vito in action. He has far more patience than I do when he encounters brain myths. Vito does not present as being defensive. Vito listens quietly and chooses his words carefully. His ending to every conversation is a bow and the words, "With respect."

sapphoq healing t.b.i.

A Different Kind of Post 7/31/08

My two favorite songs with the word "Brain" in the title:

Pink Floyd, Brain Damage http://www.lyricsfreak.com/p/pink+floyd/brain+damage_20108608.html

Ray Bolger, If I Only Had a Brain
http://www.jumbojimbo.com/lyrics.php?songid=2539&type=chords

***

One parody song I found that I like and some lyrics written by kids:

Phil Alexander, Brain Glops Keep Fallin' From My Head
http://www.amiright.com/parody/70s/bjthomas8.shtml

Neuroscience for Kids, Brain Songs (collected)
http://faculty.washington.edu/chudler/songs.html

***

Singers and bands I've heard of although I am unfamiliar with these songs:

Malvina Reynolds, D.D.T. on My Brain
http://www.wku.edu/~smithch/MALVINA/mr029.htm

Green Day, Brain Stew
http://www.musicbabylon.com/artist/Green_Day/
Internation_Superhits/42486-brain_stew-lyrics.htm

Pearl Jam, Brain of J
http://www.twin-music.com/artist_p/pearl_jam_lyrics/brain_of_j_lyrics.html

Justin Timberlake, Still On My Brain
http://www.goldlyrics.com/song_lyrics/justin_timberlake/justified/still_on_my_brain/

System of a Down, Ego Brain
http://www.fruitylyrics.com/song/System%2BOf%2BA%2BDown/Ego%2BBrain/

Bob Marley, Brain Washing
http://www.poemhunter.com/song/brain-washing/

Eminem, Brain Damage
http://www.lyricsbay.com/e/eminem/braindamage.html
http://www.lyricskeeper.com/eminem-lyrics/10579-brain_damage-lyrics.htm

***
Singers, bands, and songs that I don't recognize and probably never heard of:

New Brain Soundtrack, Trouble in His Brain
http://www.nomorelyrics.net/new_brain_soundtrack-lyrics/
225300-trouble_in_his_brain-lyrics.html

Annihilator, Brain Dance
http://www.musicsonglyrics.com/A/annihilatorlyrics/annihilatorbraindancelyrics.htm

Deine Lakaien, Brain Fic
http://www.stlyrics.com/songs/d/deinelakaien12429/brainfic451236.html

Pinky and The Brain, Theem Song
http://www.lyricsmode.com/lyrics/p/pinky_and_the_brain/theem_song.html

Paisley Brain Cell, Paisley Brain Storm
http://www.elyrics.net/read/p/paisley-brain-cells-lyrics/paisley-brainstorm-lyrics.html

Jimi the Jet, Song About My Brain
http://www.completealbumlyrics.com/lyric/50561/
Jimi+the+Jet+-+SONG+ABOUT+MY+BRAIN.html


Gene Vincent, Flea Brain
http://www.songlyrics.com/song-lyrics/Gene_Vincent/
Miscellaneous/FLEA_BRAIN/179014.html

Blood for Blood, Evil in the Brain
http://www.musicsonglyrics.com/B/bloodforbloodlyrics/bloodforbloodevilinthebrainlyrics.htm


sapphoq healing t.b.i. and having fun

OF ALTARS 2/14/07

My first teacher taught me to use my brain as the ultimate tool.
In fact, I knew nothing of casting circles-- I had learned how to
go on those soul voyages in dreaming, the care and feeding of
gris-gris bags, and rudimentary protection skills using bath salts.
[Conjure bags filled with common kitchen herbs and stones, and
bath salts were the only things she allowed me along with a tarot
deck. Since I didn't know about other tools or altars, I didn't mind].
I had no official altar for many years.

My first physical altar was a piece of wood onto which I had
used magic markers to designate the four directions and had
also inscribed some astrological symbols on.
I had run into a description of how to set up an altar and that was
my result. I kept it in the bathroom and laid it over the sink when
I wanted to use it to light candles or burn incense for specific
things I perceived I needed or wanted.

In this house, I have a circle altar where I do circle work, a moon
altar, an ancestors' altar all in one room which is warded. Also
a mini-shrine to Yemayah in the bathroom. Rocks all over the
house. [I love rocks.] A room of frogs which I also consider
to be sacred space [though not exactly what the authors of
all those books I got had in mind]. And a "witch tree"
with stones around it in the backyard. And gris-gris in my car.

After my car accident and traumatic brain injury, there was very
little I could do. I spent a couple of months sleeping twenty hours
a day. During that time, any spiritual work I did was basic. I found
a fondness for classical music and insisted that the radio station
playing it be left on all night long. I envisioned Kwan-Yin helping
me to heal up when I was laid up. I renewed my acquaintance
with the blessed darkness and shadows. What I didn't know then
was that I was experiencing photophobia from the brain injury
itself. What I did know was that the sunlight outside the window
was too bright.

As my healing progressed, I became gradually able to return to
a bit of circle work while vertical. And now I can once again enjoy
my surroundings. I no longer curse the sunlight daily. [I got prism
lenses/prescription sunglasses]. Today I still retain that sense
of my surroundings being my altar. My brain remains the
only tool I truly need.

sapphoq healing tbi