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.

HEAD INJURY STUDY CALLED INTO QUESTION 2/24/07

The practice of using Mannitol in high doses rather than in conventional doses for patients with brain injuries may not be based on studies after all. The leading doctor of the study, a neurologist by the name of Dr. Julian Cruz of Brazil, died in 2005. His claimed affiliation with the institution where the study was supposed to have occurred is in serious doubt. The institution-- the Federal University of Sao Paulo-- has stated that it doesn't know who he is and in fact never hired him. The remaining authors of the study refused to offer a retraction.

Three trials were supposedly conducted between 2001 and 2004. The results were published in peer-reviewed literature. The results purported that fatalities and long-term disabilities were lowered at six months post-injury in the group of patients which received the higher dose of mannitol.

The Cochrane Collaboration was unable to verify that the study had even occurred or where the patients had been gotten from. The death of Dr. Cruz and his lack of genuine affiliation with the institution listed on the study leaves the Cochrane Collaboration with no recourse. Thus, a serious quandary exists when making critical dosing decisions regarding mannitol when the drug is otherwise indicated in the treatment of t.b.i.

sapphoq healing tbi



http://www.medscape.com/viewarticle/552607
and British Medical Journal February 24, 2007;334:392-394.

surprise- I AM WHAT I AM 2/22/07

Here is this week's blinkie. Some folks think of Popeye the Sailor Man when they hear or read this phrase. I think of La Cage aux Folles.

In life, not everyone wishes us well. If we are really honest within our selves, we don't wish everyone else well either. We do not have to love everyone today. Nathaniel Branden calls that "spiritual promiscuity" and I quite agree with him.

If your self-esteem has been bruised and battered, you might benefit from some of the books written by him. You may not agree with everything he says. [Trauma survivors in particular may disagree with some of his material]. You may not have the same politics or spiritual outlook. [He is a libertarian and an atheist]. You may not be of the same social class or sexual orientation [He is rich and definitely a total heterosexual].

I found Nathaniel Branden's work pre-t.b.i. And because I engage in practicing the six pillars of self-esteem, when really bad crap happens I don't give up.

Here's to hoping that none of us give up-- ever!

sapphoq healing tbi

ASHES ASHES WE ALL FALL DOWN 2/20/07

When I was busy burning out brain cells in New Orleans during the Mardi Gras and elsewhere in the South, I didn't think much about that. A passing nod perhaps, and an intrinsic reaction of horror when I realized that the young woman next to me dropping purple micro-dot was pregnant. "Preggers?!?" I screeched. "You're preggers !!!" I knew nothing about brain damage then. Or traumatic brain injury. I did know about chromosomal breakage. We covered that one in Biology class. But nothing useful about the brain.

Working for many years in the human servitude field, I began to acquire bits of knowledge about t.b.i. I knew generic stuff like, "People with traumatic brain injury make the same mistakes over and over again." And, "The woman at the front desk of the Running Sores office has one of them and she is cheerful."

When I came down with my own t.b.i., generalities and chromosomes did nothing in the area of helping me cope with the realization that I had no sense of who I had been. Even today, as more memories of my past life pre-accident filter back in through the chinks of the walls of broken and unconnected synapses, I cannot describe who I was. More and more however, I can write about the things I did.

But do actions make the human being? That is one for the philosophers and the scientists and forensic shrinks to debate and toss about.

My old self was a mangled puzzle and one day I left it somewheres where it became absorbed into the energies of other displaced selves. The process of acceptance worked its magic on my newest self.Acceptance is not approval. I didn't have to approve of any of it. I just got on with it.

My traumatic brain injury has made me more practical and much less of a mystic. Car broke on the way to vacation. Did I have it towed and just go home? Or rent a car and get on with the vaca that I had looked forward to? I called a logical person and talked my way through my own thoughts about finances and disappointment. I rented the car. If a logical person wasn't available that morning, then I would have told my self that it doesn't matter what I do.

What would my old self have done? I don't know. She is lost in the droves of displaced personalities and I don't much care.

sapphoq healing t.b.i.

DIZZY 2/20/07

Signs in the news are that the docs just might be catching up to the patients a tad. Topic: non-specific dizziness, giddiness, that odd spinning of self [subjective] or environment [objective] that some of us t.b.i.-ers have gone through. U-Penn physicians tracked 345 patients from 1998 through 2004. [Patients with vertigo were excluded from the study.] Their conclusion was that dizziness can have a bunch of causes. And traumatic brain injury is included in their findings, along with anxiety and some other stuff. The recommendation that careful evaluation will help in treatment feels like fluff to me. Still: thanks docs for noticing!

sapphoq healing tbi

VISION RESTORATIVE THERAPY 2/15/07

http://www.medscape.com/viewarticle/552149

Over at the International Stroke Conference most assuredly held in some warmer clime than this one, Dr. Jose Romano presenting his findings. Using specific patterns of light, patients who had narrowed vision fields-- from traumatic brain injury or from stroke-- were found to have increased field of vision after completing a course of treatment with V.R.T. (Vision Restorative Therapy). The device has been F.D.A.-approved. Medicare reimbursement for treatment with V.R.T. is being sought.

Due to my own experiences with Vision Therapy and the use of a specific colored light, I am cheering loudly!

sapphoq healing t.b.i. and a.b.i.

PERCEPTIONS AND TRAUMATIC BRAIN INJURY 2/15/07

In a society that seeks to annihilate individuality and seeks to impose its' own standards and ways of being upon all of us, I wish to present to you this parable of a bear. In many ways, the bear represents traumatic brain injury survivors and the power-plant bosses the reactions of those who are unfamiliar with the many faces of t.b.i.

With fond thanks to G. for providing this story.

Once there was a bear in a forest. Over the winter, men came and build a huge power-plant where he was, so when he woke up there was some unfamiliar landscape...He started roaming around and suddenly a man came and gave him a broom, "What are you doing? Start workin', ya lazy bastard!"

"But I'm not a man, I'm a bear!"

"Excuses, excuses!"

"No, really, I'm a bear!"

"Bears live in the woods, do you see any woods here?"

"No, REALLY I'm a bear."

...so the Foreman came....

"Sir, this worker pretends to be a bear and doesn't want to work."

"Nonsense, all the bears live in the woods, let me talk to him,"...and he looked at the bear with scrutinizing eyes....Blink! Blink!

"Nope, that's not a bear."

....so when the Bear stubbornly insisted he's not a man, he's a bear, they took him to the Board of Directors.

"Sirs, this worker has been pretending to be a Bear."

They consulted, they looked into their books and documented the situation. Then they had a secret meeting and eventually, when they got out, they deliberated: "In our experience, and based on our thorough assessment, this man is not a bear, but a lazy worker."

...but when the Bear continued to insist this is a huge mistake, everybody got so irritated that they took him to the Owner of the Corporation.

That little old man looked at the bear and then invited him to go on a ride. They got down at the Zoo and went to the Bear Cage, where a bunch of bears were lazily having their siesta.

"Hello, Bears, would you kindly tell this worker he is not a bear?"

The bears looked for a while from behind the bars at the Bear, and then grunted:

"No, no bear."

"But WHY?" shouted the Bear. "Look at my PAWS, look at my TEETH for chrissake!"

"No, you're not a bear. If you were a bear you would be here, behind the bars, right?"

So, crushed, the Bear got back to the power-plant and got his broom and his white casket and became a Worker. Summer came, then Autumn and then, in November, he crawled back in his den and fell asleep.

The End

sapphoq healing tbi

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

PROTOCOLS FOR TREATING SUSPECTED BRAIN INJURIES 2/12/07

Short answer-- there is none in New York State. West Virginia has one. But we here in the currently almost frozen north do not.

I actually went to part of the local t.b.i. support group tonight after an absence of several months. To my delight, some folks from another support group were there. One of the fellows was proposing that our region adopt a protocol to include the field blood work being done on our soldiers when injured in battle [but not available here yet] and a S.P.E.C.T. which measures blood flow and brain activity. I will be writing more about this on another day.

sapphoq healing t.b.i.

INTIMIDATION AND MOTIVATION 2/12/07

Rather unfortunate this whole question of motivation and the traumatic brain injury survivor. I suspect that I am not the only t.b.i.-er in the universe with disappearing motivation. The problem lies in intimidation. The world is noisy and multi-tasking. I am neither. Now finding my new true self even more out of step with society as a whole than I used to be, introspection and deep dark thoughts are now the norm. Or to put it another way-- the laziness factor.

I have written about this problem before. Laziness is composed of many facets. We have the sit factor, the sit-and-pitch-numerous-bitches factor, the mystic-meditator factor, and the oh-hell-I-think-I'll-just-sleep factor. Reality can be intimidating to those of us who are now content with or have to make do with single-tasking. Since I am not prepared to argue that reality is entirely subjective, I must leave behind the fantasy world of the quick-fix and the get-rich-now. We are indeed human beings and not human-doers as the old saw goes. I find that being usually does not exist outside of a context. Thus the backdrop of doing cannot be eliminated.

Intimidation. Change is intimidating. A messy house-- or rather, the prospect of cleaning it up and organizing-- is intimidating. Taking risks is risky. Am I better off hanging with bunches of people who have no ambition or hanging with people who do have ambition in healthy measure? Is it better to keep the peace or to hold one's own in an argument? Is intimidation the indication of time to run off and hide or the measure of inner strength?

Questions, questions, questions. These questions do have answers. If I want something different, I must do something different. The old ways and the learned new ways do not work. Change I must. And so I look intimation squarely in the eye and I laugh!

sapphoq healing tbi

MACULAR DEGENRATION MEDICATION AND RISK OF STROKE IN OLDER PATIENTS 2/5/07

http://www.medscape.com/viewarticle/551479

A medication called Lucentis (ranibizumab) has been tentatively linked to an increased risk of stroke in older patients in an ongoing study designed to test its' safety. Lucentis is prescribed for patients who have the wet form (neovascular) of Age-related Macular Degeneration (A.M.D.). The pharmaceutical company Genentech sent a warning letter to physicians on approximately January 23rd.

In the study, patients who got the recommended dose of ranibizumab were at increased risk for stroke over patients who got a lower dose. Patients who have a history of stroke were also at increased risk for having a second stroke. There was no increase in stroke-related deaths.

Age-Related Macular Degeneration is a disease of the retina. It is the leading cause of vision loss in the elderly. It is progressive. It comes in two forms-- dry, and wet. The dry form can shift over into the wet form which is thought to be the more troublesome of the two. Although a thorough eye examinations including dilation is not prioritized by adults aged 50 and over, there are advances in treatment for A.M.D. and hopefully at least one of them will not care the increased risk for stroke.

sapphoq healing t.b.i. and a.b.i.

FAT IS NOT WHERE IT'S AT 2/2/07

61% of all Americans are overweight. 23% are obese. I prefer to call it like I am-- fat, not "phat, overweight, obese, chunky, fluffy." I am fat. Some folks are fatter. Fat was not a problem brought on by my traumatic brain injury. Fat remains though, in spite of my best intention.

There are five ways recommended to lose weight--
[1 and 2]. diet and exercise- [eat less and exercise more" is what my doc told me; "pushing the table away" is what my dad says]-- that's two,
[3]. changing behavior-- stuff like no ice cream or junk food in the house, more veggies and grains, drink more water, eat off of smaller plates,
[4]. prescribed drugs [including the one that gives ya the shits if ya eat fatty stuff that makes 2 available right now with 130 coming up through the ranks], and
[5]. fat surgery for the fatter folks.

So now I am fat and have a traumatic brain injury and fibromyalgia and more depression. Some of us do wind up in that boat and it is sinking. What to do.

sapphoq's thoughts:
1). I threw away the scale because it lies.
2). If I must weigh myself, then I weigh myself at the gym after a workout.
3). I must weigh myself once in awhile, so then I must go to the gym. Surely I can manage to put up with 30 minutes or so of healthy activity. Gyms with some member who are fatter than I am are my idea of nirvana. Indeed, there is nirvana in my neighborhood. And I am nice to all of the fat people there. Every single one of them. Cuz if they can do it, then so can I. I don't deal with no skinny-assed bitches there. Just the other folks there who are fat like me or fatter.
4). There is no more ice cream in the house. I haven't tried no junk food in the house, more water, or smaller plates. Perhaps sometime I will.
5). I haven't lost any weight. I have gotten stronger physically. I keep in mind my goals: Avoid or delay diabetes which runs in my family. Firm the fat.

Sometimes I have like an evolutionary fantasy. If people are getting fatter on the average, perhaps it is one of those evolutionary changes. And the fat people will all die off or perhaps the fat ones will wind up having the advantage in a hundred years or so when pollution rules the earth.

That is probably a variation of justification for fatness. So I will have to discard it and get on with practicing healthy eating and exercise habits.

sapphoq healing tbi