Wednesday, December 27, 2006


A standard protocol of treatment for moderate to severe traumatic brain injury in patients within the first week post-trauma is the administration of propalactic anti-convulsants in order to lower the risk of subsequent seizures. Hospitalized patients with coma states may actually present more difficulty in the recognition of seizure events than non-hospitalized conscious patients. T.B.I. patients are at a greater risk of developing epilepsy than age-matched controls (risk factor increase of 6.9%). T.B.I. patients who have one or more seizures during the first week post-injury are at a greater risk of developing epilepsy than those who do not (risk factor increase of 8%). Other risk factors [only one needs to be present] quoted in the same article are:
  • focal signs (as seen by neuroimaging techniques) at the first examination
  • missile injuries
  • frontal lesions
  • intracerebral haemorrhage
  • diffuse contusion
  • prolonged post-traumatic amnesia
  • depression fracture
  • cortical-subcortical lesions.
Although folks with mild Traumatic Brain Injury [i.e. not life-threatening, yet still may be life-altering] have less of a risk of developing epilepsy than those whose T.B.I. is diagnosed as moderate or severe, education on how seizures may manifest should be provided. Typical signs of seizure activity in those with mT.B.I.-- from the same article-- may include:
  • focal clonic activity of an extremity or hemibody
  • eyelid fluttering
  • lip smacking
  • episodic staring associated with motor automatisms.
sapphoq healing tbi says: The importance of observation of the mT.B.I.-er for possible seizure states needs to be stressed and included in emergency room aftercare instructions. Specific examples like those provided in the article are more helpful to carers than no examples at all [or no instructions given regarding these things, as in my own case] or the suggestion to return to the e.r. if the mT.B.I.-er is difficult to arouse.


The December Annual Meeting of the American Epilepsy Society saw the presentation of a number of significant papers on epilepsy including the recognition of a biomarker as a predictor for T.L.E. in studies of animals with brain injury, a link between the control of epilepsy fostered by treatment of sleep apnea [present in 47% of epileptics and in 50% of T.B.Iers], and the effectiveness of brain surgery in alleviating T.L.E. seizure states.

Medscape has resource centers devoted to various medical conditions, including one on epilepsy which can be found here.

"Currently, there are no reliable surrogate markers for epilepsy, which is one of the holy grails in all diseases. Right now we use interictal EEG spikes [to diagnose epilepsy], but they tend to be nonspecific and don't indicate where seizures originate, so they are less than ideal," Dr. Engel told Medscape.

Animal models of temporal lobe epilepsy (TLE), as well as human data, show that fast ripples are specific to the area of the brain that generates seizures. Furthermore, said Dr. Engel, research has also shown fast ripples correlate with the severity of epilepsy and are able to predict which animals will develop seizures following brain injury. [end of quote]
from 12/12/06 article by Caroline Cassells
Fast Ripples Making Waves as First Reliable Biomarker for Epilepsy

According to Dr. Malow, a growing recognition among the scientific community of a definite link between OSA and epilepsy led to the study.

One possible explanation for poor-quality sleep in individuals with epilepsy may be the tendency to have sedentary lifestyles and daytime sleepiness, effects that are frequently attributed to the sedating effects of antiepileptic drugs (AEDs).

Whatever the reason, she added, research suggests that poor-quality sleep can lead to increased seizures. While the mechanism is not entirely clear, the current thinking is that sleep deprivation increases neuronal excitability, which in turn triggers and increases seizure frequency. [end of quote]
from 12/4/06 article by Caroline Cassells Treating Sleep Apnea May Reduce Seizure Frequency in Refractory Epilepsy
Yet, despite enhanced treatment options, many patients are not offered advanced therapies, including epilepsy surgery, even though it can offer patients with temporal lobe epilepsy about an 80% chance of becoming seizure-free. [end of quote]
from 12/12/06 article by Caroline Cassells
Neurologists May Underrecognize, Undertreat Epilepsy

Other news from the
First North American Regional Epilepsy Congress: 60th Annual Meeting of the American Epilepsy Society
December 1 - 5, 2006, San Diego, California

This concludes a brief review of recent epilepsy news on .

sapphoq healing t.b.i.

Friday, December 22, 2006


Medical News Today at
reports that:

"A new cap that cools the heads of babies born with moderate to severe hypoxic-ischemic encephalopathy (HIE) was approved by the Food and Drug Administration (FDA) earlier today."

It is hoped that these caps will prevent brain damage in some of the babies born with hypoxic-ischemic encephalopathy and reduce the death rate associated with this condition. Currently, approximately 20% of HIE babies die and 25% of them are left with permanent disability. Before the approval of cool-caps, there was no treatment option available for this condition.

sapphoq healing tbi and abi

Wednesday, December 20, 2006


Science Daily reports what we've known all along: Laughter is contagious.
Researchers have pinpointed the pre-motor cortical region of the brain as the area that responds to laughter [and other things like smiles, cheers, and barfing.]

fMRIs showed greater responses to cheerful stuff like laughter and weaker responses to screaming and barfing. Science Daily wrote that this shows that laughter is more contagious than other "negative" stuff. [sapphoq's note: Thus, laughter is more contagious than barfing or chicken pox?]

sapphoq says: Some of us folks with traumatic brain injuries have a difficult time mirroring the expressions of those around us. Perhaps funny movies would be an easier way to re-learn some of this stuff, even if our sense of humor has been "altered" to something unrecognizable by the professionals.
Professionals often claim that we T.B.I-ers don't "have a sense of humor." That is more their failure to recognize rather than our lack. I spent many hysterical hours in the tbi chat room-- with folks who were like me-- trying to figure out the names of the seven dwarves. None of us did remember all of them and we frequently diverged into other names for the dwarves which were funnier than the originals.
At any rate, those hours in tbi chat were indeed healing for me and the beginning of being able to re-establish communication with others on a meaningful human level for me. We had our own version of the English language going on there called tbi-typese. [One friend remarked during that time that it was difficult for her to understand my e-mails. She didn't know tbi-typese. Re-learning how to spell came for me months later as I participated in various e-groups. She never did pick up on tbi-typese. That was her lack!]

So if any professional helper-person tells you that you, a survivor and thriver of traumatic brain injury, do not have a sense of humor, you have my permission to laugh at them however silently and to be assured that they are seriously wrong about that one.

sapphoq healing tbi

Thursday, December 14, 2006


Looks like there is an on-going dilemma developing in Maine. Yet another attorney of a man who has a traumatic brain injury is looking for a get-out-of-jail-free card. In spite of a t.b.i. suffered as the result of a car accident one week after high school graduation and personality changes, Todd Curry managed to pick up a degree and a career as a merchant marine. There were two girlfriends who had difficulties living with him, domestic violence charges dropped to "disorderly conduct," and a son.

The first girlfriend moved out because Curry was afraid of the house burning down. She was "not allowed" to install or use her dryer or burn candles or use night lights. She asked that Curry stay away from her. Seems he was driving down her road and shining his car lights into her new abode at night. He was allowed to keep his car. Todd Curry started a border dispute with his neighbors, allegedly believing that they were growing marijuana on his land. He shot his gun off on or near their property at night. He was allowed to keep his car and his gun. The last girlfriend would not press charges of domestic abuse so Curry was once again allowed to keep his gun. He used said gun to shoot his own son Anthony Tucker dead. Now the assistant D.A. has called for a psychiatric exam. Todd Curry's supporters are excusing his actions with a bipolar disorder diagnosis and repeated hospitalizations.

I don't buy this "My traumatic brain injury made me do it" or "My whatever made me do it" crapola and neither should any self-respecting person with any sort of disability. Add to it the idea that it's okay for those of us with serious psychiatric disorders [whether caused by or worsened by the insults to our brains] to have guns, well there is something wrong there with our thinking that is for sure. It is not okay for most all of us folks with a traumatic brain injury to have a gun. And it is not okay for most all of us folks with psychiatric conditions to have a gun. The average citizen can own a gun safely. We cannot.

Some of us with traumatic brain injury plus-- or even with just t.b.i.-- lack insight into our difficulties. Some of the rest of us do know but we go out and purchase guns anyways. Hardly anyone likes to admit that yes, we do have some limitations. Especially if those limitations mean that we pose a risk to society if we are allowed to own a gun. Then when we beat someone, stalk someone, threaten someone, kill someone, we run off to the attorneys who for a price are willing to provide us with the best legal defense possible. Which is our legal right.

How about the rights of people to live free of mental and physical intimidation? How about the right of a man's son to live a life instead of getting shot down like some animal out in the woods?
If we who have disabilities want "what everyone else has", we oughta take on some
responsibility for our bad behavior. In other words, commit the crime, do the time.

And by the way, in case anyone is wondering. I don't own a gun. In spite of the laws that say I can own a gun, I don't. I recognize my risk factors. See above.

sapphoq healing tbi

Wednesday, December 13, 2006



The Washington Post reports today that patients who have a first stroke caused by blocked or reduced blood flow may be at a higher risk for a second stroke.  120 patients were given M.R.I.s 24 hours after and 5 days after, and then at 30 day intervals after their stroke.  Those with brain lesions producing no symptoms were at a higher risk for a second stroke  and death from vascular causes.

The study done by researchers at the National Institute of Neurological Disorders and Stroke concluded that follow-up M.R.I.s can predict a second stroke more accurately than waiting for onset of symptoms.

Now if we could just convince the H.M.O.s of the value of this study.

sapphoq on healing t.b.i. (and a.b.i.)

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Monday, December 11, 2006


Based upon personal experience, I thought I would share these tips with you. Please remember when reading through them that I and others have tried to change things around and were unable to. Sometimes, quitting can be really healthy. Especially when the "fun" has been taken out of dysfunctional.
  1. Allow people to talk amongst themselves for ten minutes before moving on to "announcements."
  2. Make sure "announcements" take up fifty minutes.
  3. After announcing when the next Brain Injury Association board meeting is, make sure you continue to bitch about how some folks there aren't doing their jobs well, aren't worth their salaries, and so forth.
  4. After announcing the next series of Best Practices Workshops, make sure to tell everyone in explicit detail why you won't be attending.
  5. After announcing when the next annual Brain Injury Association conference is, make sure you talk about how they are big meanies for not letting you talk about how to run a support group.
  6. Talk about how "no one" wants to do anything for the support group. Make sure to itemize the failed bake sale last year in particular, the speakers you got and only five people showed up that night, and how you have been the leader of the support group for too long.
  7. Make blatantly prejudicial statements about non-christians, glbt rights, and anything else that will demonstrate just how wonderful you are. After all, only people who are exactly like you come down with traumatic brain injuries.
So there they are. The reasons why I dropped out.

sapphoq healing tbi

Friday, December 08, 2006


Some percentage of us [that means I don'tknow what percentage] who have traumatic brain injuries as well as some percentage of the neurotypicals have difficulties with crowds, noise, lights, overdoing, fatigue and all of that. It is the holiday season-- Christmas, Chaunakah, or other-- and stores are blasting christmas music, lights are flashing, and people are on the go, go, go. Here are some things I use to cope with the excessive stimulation of the season:

  • Shop at off-times. Use your computer to order stuff from the internet. Or order from catalogs via telephone.
  • You might want to consider asking someone else to drive.
  • Wear your brimmed hat, baseball cap, special glasses, sunglasses to cut down on glare and over-stimulation. If you have motility aids, now is not the time to leave them home.
  • Take anti-meltdown breaks. No one have ever argued with me when I retreat to a bathroom with "cramps."
  • Allow other people their joy. Sure, people assuming that you share their religious fervor can be annoying. Bell-ringers can be annoying. Ask yourself how annoyed you want to be.
  • If money is an issue, look for bargains off-season or little crafty things you can make instead. Can you draw? Bake cookies? Make cotton dishcloths? Those that value presents over our presence have their priorities mixed up. Their problems do not have to be ours. And, overspending does not help anyone.
  • Remember why you are doing this. Perhaps you celebrate a religious aspect of the holidays. Maybe you have kids in the family. Or you have some good friends to hang with.
  • Above all, quit whining. Some folks aren't alive to complain.
sapphoq healing tbi

Monday, December 04, 2006

traumatic brain injury healing 12/4/06

first, remember--
or write it down if you cannot remember--
your brain has been altered.

you are no longer the who
of who you used to be.
instead, you are altered
along with your brain.

second, remember--
or write it down if you cannot remember--
magic is healing
but not the way you want it to be.

after a time, you may remember
more about what is really important
and less about the labels
and the things
that cause bleeding
and pain.

after a time, your magic will fly
again and you will laugh,
but only after a time.

third, remember--
or write it down if you cannot remember--
that you are courage

and yes, it takes lots of courage
to dream new dreams.

Author's Notes: To those who know of the healing I speak,
who dare to dream new dreams,
who are willing to learn how to thrive in spite of,
who live in the silence ever more.

Spirit flies when we fly.


helpful hints when confronted with a changed brain

Traumatic Brain Injury is forever. There are some of the things that we and the people around us can do that help:

GET ALL THE HELP THAT IS AVAILABLE. This includes some form of cognitive rehabilitation, a vision check by a behavioral or developmental optomotrist, a complete audiology examination, services of a competent psychiatrist who understands traumatic brain injury, physical therapy, massage, vocational- rehabilitation assistance, job coaching, counseling, cognitive testing, brain injury specific support groups, tbi-specific chatrooms and e-groups...

I went to the local RCIL [Resource Center for Independent Living] to talk to a disability advocate. I also have permanent brain injury related vision difficulties. I was able to get specialized vision therapy and prism lenses. Proper medication helped me with a worsening mental condition. Therapy in a heated pool helped with my flexibility and my back pain. My mild expressive aphasia [expressive aphasia: I can't always find the words I want to say] and my central nervous system tremor [tremor: shaking without meaning to] are two of the other things that I just put up with.

REMEMBER THAT HEALING TAKES TIME. Learn to recognize small increments of progress. Be prepared for setbacks, mood swings, tantrums. Having a routine and structure helps with healing. So does exercise, nutrition, and rest.

I thought I would be able to pick up my old life and return to work within a matter of weeks. Instead, I found myself having to keep working at things that used to be automatic. I also lost any ability to multi-task [multi-task: do more than one thing at once: like look for a word in a book and have my husband ask me a question]. I had to learn how to do things in new ways.

FATIGUE IS THE ENEMY. Fatigue interferes with healing. 50% of all TBI survivors have a sleeping disorder. Advocate for referral to an ENT doc who will be able to screen for sleep apnea and narcolepsy.

My own sleep apnea was diagnosed a couple of years after my traumatic brain injury. I now sleep with a C-PAP machine because the sleep study showed that I stop breathing in my sleep. The C-PAP machine forces me to keep breathing and I feel more rested. I am no longer sleep-walking through life.

WE MAY NOT BE ABLE TO DO SAFELY EVERYTHING THAT WE THINK WE CAN DO. Our insight into our injuries and our changed personalities depend very much on the sites of our brain injuries. We may insist that we can drive even with severe field cuts [field cuts: what we can see is not wide enough to see to our left or our right when driving; or we may be missing parts of what we are looking at] in our vision. We may want to go to the gym when vertigo makes it unsafe. We may want to pick up with our lives long before it is possible. For some of us, we will have to learn the courage to dream new dreams.

I have to check with the people and professionals around me when I have a great idea about something that I want to do. I also cannot be on the go all day long like I used to. I had a career which I can no longer manage. I am in the process of learning skills for a new line of work.

HUMOR IS HEALING. It is natural to be oversensitive at first to the changes around us. Some of us lose friends who cannot handle the changes they see in us. Sometimes we find that we are making the same mistake over and over. Or we may forget things a lot, complain a lot, or not want to use aids to help us with everyday stuff.

I became a chronic complainer. Nothing was good enough. I no longer understood the people around me. I was too serious and very easily hurt.Reaching out to other survivors helped me to regain my sense of humor. I spent many hours with my on-line friends at trying to remember the names of the seven dwarves. I can laugh and my laughter frees me.

My life is different today. But it is still mine.

sapphoq healing tbi


Friday, December 01, 2006


By nature I am a list-maker. I make really good lists. Unfortunately, I cannot implement them. I have lists for sleeping, daily schedules, housekeeping routines, and all kinds of things. Recently, I came across a bunch of lists I had made pre-injury. I hadn't been able to manage time or anything else according to those lists either. Now, the after-effects of my traumatic brain injury has really messed with any organizational skills I possessed in those days when I was full-brained.

I threw out all of the meaningless lists and decided that I needed to start over with short goals. A couple of weeks ago, I decided that I would eliminate the use of sugar in coffee. I have been able to do that. Much to my amazement, there is coffee that I recognize as being horrid. The massive sugar-dumping I was doing was fooling my taste buds into thinking that all coffee tastes good. It doesn't.

Because I had failed so badly at list-making and long-term goal-planning, I am now setting daily goals. Today, my goal was to spend x minutes sorting through the piles of stuff taking over the dining room table. Previous goals to clean the house, sort and organize, follow various housekeeping routines were untenable. I could and did spend the x minutes today. The dining room table still needs work. It will take longer than x minutes to "fix this." My x minutes is a start though, a sort of goal-ette. I feel able to continue with setting a couple of short mini-goals every day.

The whole idea of healing is to expand my horizons, not limit my participation in the world. Being unable to organize my life has constricted my life. I am done with that. Little by little, with the help of my mini-goals and the lack of time-wasting lists, I continue to progress.

Googling "goals" or "setting goals" will yield results that lead mostly to programs which wish payment for their services. Money is at a premium at the moment so that will not be happening in my life. Consequently, I have to learn how to do this the old-fashioned way, without the helpful expensive software. Other people are able to do this without the software and I can learn how to do it too.

One short thing that is useful in setting goals is the acronym S.M.A.R.T.
S.M.A.R.T. can stand for a bunch of words but the ones I like the most are:

Specific, Measurable, Attainable, Realistic, Tangible.


Specific- Who? What? Where? When? Why?

Measurable- Can I put it on a chart?

Attainable- Do I have or can I get the stuff necessary to work on the goal?

Realistic- How much time and energy do I have? Is the time frame correct?

Tangible- Is the goal visible or is it mental masturbation?

With my mini-goals, the questions become focused to the here-and-now. Thus, I decided that I want to stop putting sugar in my coffee. That is specific.
If I put sugar in my coffee, that is a - and if I don't that is a + so it is measurable. [Even though I don't put it on a chart].
I am able to live without having sugar in my coffee. So it is attainable.
Not putting sugar in my coffee requires almost no energy. So it is realistic.
I have a cup of coffee in my hand without sugar. So it is tangible.

Remember, to keep your goals S.M.A.R.T.
And never give up on you.
Keep striving!

sapphoq healing tbi

Saturday, November 18, 2006


A baby boy in New Zealand was shaken by his father and it caused two large black holes in his brain. Little Brodie Christopher Barry Te Waaka-Price suffered a loss of 25% of his brain. Because his parent shook him, he will not have an average life. He is most likely blind. He cannot hold his head up. He had to have excess fluid drained from his brain. There is evidence of two broken ribs and at least one other incident of shaking. Dad is in jail. Mom is supporting dad but hopes that New Zealanders will become more educated to shaken baby syndrome and the traumatic brain injuries and long-term consequences that can result from it.

Read more at:,2106,3866261a11,00.html

A twenty year old father of a three month old baby in Massachusetts was arrested on October 20. The baby required evacuation of a large amount of blood from inside her head. She had other injuries...On October 13, a couple living in Rotterdam NY with their 3 children and 2 foster children brought their youngest to the emergency room. They have both been charged...On November 17, a mother was convicted of killing her baby girl. The baby had multiple skull fractures and various other injuries. Cause of death: traumatic brain injury [SBS]. Mother blamed the injuries on her three year old son. The little boy had told police that "Mommy did it."...26 year-old boyfriend in Michigan charged with shaking a baby to death...Baby boy in New York City dies...[For alternative explanations and stories of those who may have been wrongfully convicted of shaking a baby into serious traumatic brain injury or death, please goto:]

The National Center on Shaken Baby Syndrome at: gives us this chart on symptoms:

Common Symptoms of Shaken Baby Syndrome:

  • Lethargy / decreased muscle tone
  • Extreme irritability
  • Decreased appetite, poor feeding or vomiting for no apparent reason
  • Grab-type bruises on arms or chest are rare
  • No smiling or vocalization
  • Poor sucking or swallowing
  • Rigidity or posturing
  • Difficulty breathing
  • Seizures
  • Head or forehead appears larger than usual or soft-spot on head appears to be bulging
  • Inability to lift head
  • Inability of eyes to focus or track movement or unequal size of pupils

A parent or caregiver usually shakes a baby because they are angry over things like intense crying, feeding, and toilet-training. One incident of shaking can dictate a future for a baby that includes long-term consequences or death. The National Center on Shaken Baby Syndrome site has more information, testimonials, and resources.

says that: "Approximately 60% of shaken babies are male, and children of families who live at or below the poverty level are at an increased risk for SBS as well as any type of child abuse. And it's estimated that the perpetrators in 65% to 90% of cases are males - usually either the baby's father or the mother's boyfriend, often someone in his early 20s."

Other studies found on a search engine reported precipitating factors such as active addiction in a parent or caregiver [including live-in significant others], legal problems, and loss of jobs. One characterological trait that was common to the perpetrators was lack of impulse control. At-risk families included those who display rigidity in thinking, unrealistic expectations of events or behaviors that an infant or child can control, a history of a parent having been abused as a child, and depression or low self-esteem present in a parent. Babies who were born prematurely or who were identified as already having a disabling condition were also statistically at higher risk.

Shaken Baby Syndrome can be prevented and education of parents and caregivers does help. This education may take the form of educational videos, educational pamphlets, drop-in family centers in high-risk areas, home visits, and information offered by physicians. Websites dealing with Shaken Baby Syndrome drive home the message: Never shake a baby or a child. They also offer variations of the 5 S-s to deal with crying after checking the general condition of the baby:
side-to-stomach positioning

And if all else fails, get help. There are far too many of us in the tbi club already.

sapphoq healing tbi

Thursday, November 09, 2006


I went to visit an aunt today and had occasion to watch "The View" with Rosie O'Donnell and all of them. "The View" is not a show I would ordinarily watch. I did watch it though because my aunt was watching it.

Barbara Walters was on the show and she brought along her best friend Beverly Sills. For those who don't know [and I didn't either] Beverly Sills was an opera singer who quit at the height of her voice at the age of 50. She does not sing anymore-- ever.

Upon quitting, her husband gave her a ring with the words "I've done that already" engraved on it. In turn, she passed the ring on to Barbara Walters when she retired from Big News Teevee.

So now when I get impatient with my slow progress and begin to beat myself up mentally, I can say to my self, "Self, I've beaten my self up already. I don't have to do that again." Or, when I think about attempting to return to work for Running Sores Incorporated, I can say to my self, "I've done that already!" And the beauty thing is, I don't have to suffer through a position at Running Sores ever again.

"I've done that already" has become my new temporary motto which I intend to use to stave off any bad repeat decisions or whatnot. I've done that already, and I don't have to do it again!

Freedom is as much a freedom to go forward as it is not to return. If I've made that mistake before, there are plenty of new ones to choose from!!!

Negativistic thinking? I've done that already.
Procrastination? I've done that already. Now since I've already procrastinated, I can take action instead!
Laziness? Yep, I done that already too and perfected it to a science. I don't have to keep doing that anymore. Cuz, I've done that already.

If I want something different, I gotta do something different.
Anything worth having is worth working for.
Time to get off my duff and get going.

I don't have to sit on my duff any longer and whine, whine, whine. I've done that already AND I am done with that!!!

sapphoq healing tbi

Wednesday, November 01, 2006


Sunday is the third anniversary of my traumatic brain injury. Three years ago this Sunday, I escaped death once again. My car was violently slammed into a house, leaving a large hole in the foundation [through which one could jump into the basement], and I lived to complain about it.

Through my husband's nieces, I have been blessed with two grandnieces and two grandnephews. Grandniece #2 through no fault of her own had the misfortune of being born on the same date as my car accident and traumatic brain injury-- she was born later that same evening. Consequently, anniversary #1 and #2 post-tbi I had remained selfish and self-obsessed enough to refuse to attend her birthday parties.

This year anniversary #3 I decided that I have to live in this world and that the people of this world don't necessarily have to live in mine-- especially little grandnieces who really have nothing to do with my own struggles and regrets. The fact that she was born on an inconvenient day for me is nothing to her and ought to remain nothing to her--and perhaps even to my husband's family. Basically, we are really alone in our own skins. Thus, part of this whole adult thing is to be able to function in spite of the personal junk zipping through my internosphere at any given moment in time and not to inflict it upon the innocent bystanders around me.

I thought a few weeks ago that this tbi anniversary thing would not "mean anything to me this year." I thought wrong. Because it does. I have my regrets and some resentments that the help I got did not include tbi rehab nor any real help to be able to get back to working. Thus it is three years later and I appear to be no closer to becoming a productive self-supporting member of society.

Well, I know I cannot fix the past. Nor can I fix the local shithead VESID agency's
inability to deal with me nor mine to deal with VESID. Sometimes there is a price
to pay for being non-pliable. That price is once again for me to really have to
knuckle down and do much of my own work without oversight or "help" from the
professional vocational rehabilitational businessites. Consequently, I am forced
to handle my own anxieties and doubts about this whole work thing instead of
having the insane luxury of thinking that some VESIDite with a sterile safe life is going to "fix this."

Finding professional cheerleaders to be highly overrated, I am thereby committed
to making my own way. That is a bit old at this point. And yet, I cannot live
any other way. That is the reality of it all. We can all walk together on parts of
our individual journeys thru this life. But no one can walk for me nor I for anyone else. Thus, I find comfort in knowing that I have some really good friends and yet as a grown-up, I still have to retain responsibility for my life decisions.

This year, I will endeavor to re-connect to my sense of self-efficacy as I continue up the road of healing tbi.

sapphoq healing tbi

Wednesday, October 25, 2006

HEALING TBI 10/25/06

I decide that I want to have a healthy life.
If I want something different, I gotta do something different.
I empower my self to make the changes I need to make in my own life.
I identify what helps me in my healing and what hurts me in my healing.
I dump toxicity.
I stop hurting others and stop allowing others to hurt me.
I recognize my progress.
I work towards community empowerment with others.

With a nod of thanks to Charlotte Kasl whose book inspired me to create my own healing statements.

~sapphoq healing tbi

Tuesday, October 24, 2006


Yesterday-- in a tbi-induced frenzy-- I decided to clean up the mass of wires on the computer desk leading to hither and to nowhere much like my life. I went to the Home De-pose and bought some hard hollow gray circular stuff into which I thought I would insert some of the wires [to save them from the computer kitten who seems hellbent upon destruction for attention], a small handsaw-like object to cut, and electrical tape in five colors.

So equipped, I settled in behind the desk to detangle the mass that has become the kitten's playground. First I traced wires back from the surge protector to their various sources and gave them little tapes of color. Therein the difficulties began. In the maze of gigits and transformer boxes and whatnot, it quickly became apparent that I had no clue of the functions of many of said objects were. I cut and taped like a mad woman. I hacked away at the unyielding gray stuff, strung tubes like bad necklaces, assigned more colors, created a pile of gray shaving everywhere. It became apparent that once again my tbi-brain had done me in. I unstrung the gray mess, plugged everything back in [now color-coded without a code], and dumped the newly uniquely tangled mess into a crate. I capped the mess with a plastic shelf to bar the computer freakin' kitty from using the crate as yet another sleeping hole.

Disgusted, I limped on with my day the best I could.

The good news: computer kitty wants nothing to do with the mess in the crate.
The bad news: neuro-fatigue and discouragement abounding this morning.

Some days I just should stay in bed.

~sapphoq healing tbi sort of

Sunday, October 22, 2006


sapphoq healing tbi says:
The URLs below and snippets contained therein were culled directly from Google searches. Under the law, a defendant is entitled to the best defense possible. Unfortunately, traumatic brain injury is one of the strategies that a defense attorney will use to argue culpability, capacity to stand trial, or mitigating circumstances for horrendous crimes.

"I did it but my tbi makes me not responsible for what I did."
"I did it but I should not have to answer to a jury of my peers for what I did because of my tbi."
"I did it but I deserve less punishment for my crime because my tbi influenced me."

We who have traumatic brain injuries need to come out against these sorts of excuses for bad behavior. If we want the same freedoms that non-disabled folks enjoy in society, then we also need to take the same responsibilities for our actions just like anyone else.

Read on for an edumacation in defense lawyer speak. And please remember that all of the words quoted below each url were pasted directly from the same.
The defense argued that McClain suffered a traumatic brain injury, and that while the murder was horrendous, what he did to Friedman did not amount to torture.
Before the murder, said defense attorney John Bernitz, McClain fell on a bolt in his father's shop and punctured his skull -- an injury that affected his ability to control his emotions. McClain said he worried about changes in his own behavior and tried to get help but couldn't.
...McClain raped, sodomized and beat Friedman with a bat, court records say. He tied her up, shaved her head and made her look in the mirror at her disfigured face, telling her "Do you think any man will want you now?"
...[Jerry McClain, Anchorage AK, defendant] said a medical system that refuses to help people like him when they ask for help has to share some of the blame for what happened.
"This was a preventable crime, your honor," McClain said.
Before the murder, said defense attorney John Bernitz, McClain fell on a bolt in his father's shop and punctured his skull, an injury that affected his ability to control his emotions. McClain said he worried about changes in his behavior and could not get help.
Defense attorney Jim Dozier hopes to show that Allen Dalton, 47, suffered a brain injury during events leading up to the murder of Apineru "Chico" Sua in April 2004.
.At the apartment, Breeden said , Dalton, Burnett and others decided Sua was responsible for Dalton's beating. They beat him and kept him in a closet overnight. He was taken to Fort Ord the next day and killed.
An autopsy report showed Sua was stabbed 20 times in the head.
Defense attorney Sean Devereux maintained Byrd couldn’t form the intent — an essential element of attempted murder — to shoot his wife because his brain was damaged from numerous head injuries suffered during years of riding bulls on the professional rodeo circuit.$11-Theft-25-Life15nov02.htm
SANTA BARBARA, CA—A Ventura County career criminal was sentenced to 25 years to life in prison under California's three-strikes law for stealing $11.53 worth of goods from a grocery store.
Ronald Herrera...already had 17 serious felonies under his belt before the January theft at a Carpinteria Von's supermarket...His oftentimes violent criminal resume included a 1971 home-invasion robbery and rape of a woman and her 15-year-old daughter in Ventura, the shooting of a police dispatcher and six armed robberies in Virginia...

...The defense contended that Herrera had suffered a brain injury as a result of the 1986 accident on the San Diego Freeway. They hired experts to conduct... tests at the cost of $20,000 of taxpayer funds to testify Herrera’s brain was probably damaged because of the auto accident and his memory problems affected his ability to recall the fact that he had actually stolen a number of items from the store.
Defendant then retained a brain injury expert who was expected to testify that defendant received a head injury in the accident that so incapacitated him that he did not knowingly leave the accident scene.
Evans held up Janklow's mangled glasses and asked how he could not have suffered a head injury. That explains why Janklow thought he was hit by a white car and made other unreliable statements, Evans said.
The attorney and Wiggin's mother submitted affidavits stating, inter alia, that Wiggin (1) had broken his neck in a 1997 motorcycle accident and had subsequently suffered memory loss and a reduction in cognitive capacities, (2) had abused marijuana and cocaine for years, (3) had unwisely rejected the favorable plea offer, (4) had had difficulty remembering events and providing non-contradictory answers to his attorney's questions, and (5) had not given his attorney important details about the criminal case prior to trial. Wiggin's attorney attempted to explain the belated timing of his motion in an affidavit, stating that he "was first apprised of Mr. Wiggin's memory loss and his reduced cognitive ability on the fourth day of the [six-day] trial by his mother and his girl friend."...
Two psychologists testified for the defense, having examined Wiggin after the trial had concluded. The first, Dr. Alexandria Weida, a forensic psychologist for the Commonwealth of Massachusetts, stated that she had met with Wiggin on two occasions...
...At least one of the meetings was in March 2004; the date of the other is not clear from the record...and administered various psychological tests, including the Bender-Gestalt test and the Wechsler Memory Scales. She testified that when she asked Wiggin whether he understood terms such as "conspiracy," he answered in the affirmative but could not provide a coherent explanation when pressed for details. She also said Wiggin was "confused" about the role of his attorney and the consequences of plea bargaining. Dr. Weida concluded that at the time of the trial, Wiggin was not able rationally to understand the proceedings and charges against him and was not "competent to fully assist his counsel."
The second psychologist, Dr. Frederick Kelso, met with Wiggin in May 2004 and also concluded that Wiggin had been incompetent to stand trial. Dr. Kelso cited two causes: (1) a mental defect and cognitive deficits caused by mild traumatic brain injury, and (2) the mental disease of cocaine abuse. Dr. Kelso testified that Wiggin had a "minimal understanding" of the concept of conspiracy. He stated that he had administered a test that showed Wiggin had trouble thinking in abstractions; the sort of results he observed were "very commonly seen in certain kinds of patients who have suffered a traumatic brain injury."...

Dr. William Ryan, a forensic psychologist with the Federal Bureau of Prisons, testified for the government. Dr. Ryan testified that he had interviewed Wiggin in the fall of 2003 ... during Wiggin's stay at a federal prison, which he believed lasted from "October through pretty late in December." and had subjected him to a test called the Minnesota Multiphasic Personality Inventory, 2nd Edition. He stated that Wiggin's results indicated that (1) he had basic comprehension skills and could understand and consistently answer true-false questions...
...By "consistently answer," Dr. Ryan testified, he meant that Wiggin gave answers that matched up logically with answers elsewhere on the test. For example, if a test-taker were to mark"true" next to the statement "I am always depressed," he would have to mark "false" next to the statement "I am never depressed" in order to be answering consistently. Dr. Ryan testified that consistent answers indicate that "the person is understanding the questioning."and (2) he was exaggerating any mental illness he suffered, suggesting "either a cry for help or some deliberate attempt to portray himself as very mentally ill." Dr. Ryan testified that he had spoken with staff members at the prison where Wiggin was incarcerated and had been told that Wiggin functioned adequately and understood directions. He also testified that, during an interview, Wiggin was able to count backward by threes, indicating an ability to concentrate, and was able to give adequate definitions of legal terms such as perjury, witness, verdict, and sentence. Wiggin was unable adequately to define several other legal terms when first asked, but when Dr. Ryan explained them to him and then asked later if he remembered what they meant, Wiggin was able to recall the definitions.
Petitioner was indicted on two counts of aggravated murder, one count of intentional murder, and two counts of rape in the first degree. the penalty phase of petitioner's criminal trial, a licensed clinical psychologist, Dr. Wise, testified that, based on psychological tests he had administered to petitioner, he believed that petitioner suffered from "moderate to severe" frontal lobe dysfunction that caused him to have difficulty controlling his impulses; that he attributed petitioner's dysfunction to an organic brain or head injury; and that the causes of such an injury could include a fight, bumping a windshield, receiving a whiplash injury, or playing "aggressive rough football." In her closing argument in the penalty phase, the prosecutor, Champion, argued:
"Let's examine Dr. Wise's testimony. There is a temptation to assume there is some sort of link between what he finds to be brain damage and what happened to [the victim] and I submit to you that there is not a connection. And here is why.
"He tells you that loss of brain cells and brain injuries is not unusual. Happens to a lot of people every year. If it happened to this Defendant wouldn't you expect to have seen something before now? Wouldn't you have expected that you would have heard testimony from somebody that said he was hit in the head or someone that said he went to the doctor or someone who said he exhibited something. That he did it under ordinary circumstances rather than having an individual that is under control when he wants to be."
The post-conviction court found that Champion's remarks were not a comment on petitioner's failure to testify during the guilt phase but were a non-objectionable argument on the weight the jury should give Wise's testimony.

Sunday, October 15, 2006


A traumatic brain injury is being trotted out as a partial explanation for the reason why a prosecutor was strolling through the Government Services Building in Cincinnati naked during the nighttime. His attorney asserted that the prosecutor had a mental illness, epilepsy, and a traumatic brain injury from a car accident. Apparently he was naked during the car accident too.

A defense attorney who knows him and who was quoted in the article was surprised. Scott Blauvelt was just a regular sort of guy. Nothing bizarre about him at all. Except perhaps that that he might have been driving around naked when he had that car accident back in 2005.

To be fair, the article was not clear as to whether that car accident was the car accident that left him with his tbi. Nor did it say whether the epilepsy was caused by the tbi or what kind of seizures he had or has. Scott Blauvelt's attorney, whose name is Mike Gmoser, claims that Blauvelt is being punished because of his medical conditions.

The prosecutor is currently on paid administrative leave from his job. He makes 70K annually. He is facing two counts of public indecency, one for each incident that the security cameras caught on tape. He also had a pre-disciplinary hearing on Wednesday October 11th.

More will be revealed? Maybe, maybe not.

sapphoq says: For 70K a year, I myself would have found other places to stroll around naked. Temporal lobe epilepsy can cause some strange sensations. Viewing those tapes had to have been a strange sensation, that is for sure. Legally, defendants are entitled to the best defense possible under the law. Traditionally, I suspect that involves lieing-- or at the very least, being reckless with the truth.
sapphoq's verdict: The prosecutor is using mental illness, epilepsy, and traumatic brain injury as a cover-up. Looking for a rational explanation to irrational desires expressed in irrational behavior leads to this kind of stuff.

~sapphoq healing tbi

Friday, October 06, 2006


I have been blessed with the greatest friends anyone can hope for. Right now I am sitting at the computer of two close friends of mine who live in Vermont. Tomorrow we are going to the Cape in Massachusetts for the weekend. I probably will not come back home til Wednesday.

I love my home and my neighborhood is alright. Sometimes though, it is nice to get away. I usually go visiting my Vermont friends four times or more a year. Last time, they stopped by to take me out to lunch on their way home from a class reunion in the mid-west.

Through my traumatic brain injury, I have lost some really close friends. I know other folks with tbi have said the same thing happened to them. A few of my friends needed to take a break when things got really intense mid-recovery for me. The really good friends have stuck and stayed, just like I hope I will for them.

I had some personality changes because of my traumatic brain injury. For instance, I used to read almost exclusively fiction. Now I read almost exclusively non-fiction-- computer books and travel books. There have been other changes too. I have to watch that I do not get too excited or over-reactive to stimuli. I also have to remember to rest enough and yet challenge myself enough to keep progressing.

I can't lie and say wishy-washy things like, "Oh, I'm delighted this happened to me." I wish that it didn't. Since it has happened to me, I have to deal with things the way they are and my life the way it is now. I do not believe that any god 'wanted' this to happen or that it 'had to' happen. It was circumstance. It could have been anyone having a car accident but it wasn't anyone. It was me. Right after the accident, I knew something had changed. I have to make the best of what I got and that is what I am endeavoring to do.

~sapphoq healing tbi

Wednesday, September 27, 2006


Myrna Orleck-Aiello did a presentation at the Techology and Persons with Disabilites Conference 2005 in California titled "Employment Outlook for Individuals with Disabilities."
Below her contact information, I have posted six paragraphs taken verbatim from her presentation. Following that is the link for the website where you can find her complete speech. A very interesting read and truly inspiring thoughts! ~sapphoq healing tbi

Employment Outlook for Individuals with Disabilities
Presenter(s)Myrna Orleck-Aiello

TCS Associates11410-P Georgia Avenue
Weaton, MD, 20902
Phone: 301-942-9766
Fax: 301-9429-9110

Myrna Orleck-Aiello is the author of all that follows. I post it here in hopes that you will check out the rest of her presentation. The words are hers, not mine. Enjoy!

We are often confronted with a broad spectrum of misconceptions and doubt when we use the word "disabled." I am here today to shatter prejudices. To me, ignorance and fear are unquestionably the greatest of disabilities. I strive to replace this lack of knowledge with insight. I aim to change fear into hope and promise.

A person with a disability seeking employment has undoubtedly already surmounted character-forming obstacles and comes armed with courage, determination and dedication.

When faced with a disability, options are clear. All of us learn very early how to go about our lives constantly finding or creating alternatives and taking those abilities we do have to a higher level. My father often reminded me of the wondrous compensating attribute which is the human mind.We also learn very early that success comes only with patient and dedicated hard work. Nothing comes effortlessly as we try to overcome our specific disability. But success will come, and along with it a deep indelible sense of accomplishment, improved self-image, and most of all an embedded conviction that hard work without doubt brings the rewards we seek.Such formative years make courage second nature, for without it we are lost. Courage is our companion every day of our lives, supporting attitudes, pushing us to dream, and helping us conquer space, time, doubt, and also our fears. And it's also the key to our aspirations. The men and women among you living with disabilities are the most daring dreamers, and I stand before you as a testament to the fact that our dreams and ambitions are LIMITLESS.

Each one of us is born with different talents, different skills. Most people are born with five senses. They say that when you lose one sense the others compensate for it. In my case, I think the compensation I got for my deafness was common sense. Certainly I think that families and friends of disabled people underestimate that extra sense. They undervalue what persons with disabilities can do and they certainly do not always believe that they have as much to offer society as everyone else. Persons with different and alternate abilities can be worthwhile productive members of the economy and job market.

Changing attitudes begins with providing opportunities. Words alone are too often relegated to the filing cabinet. ACTION is needed now. We not only need workers with disabilities, but we need people with disabilities to occupy leadership roles and policy-making positions. Only then will the interests of these minorities be for and by the minorities.In the private sector, opportunities will come through education and training. Corporations must be made aware that there are tools available right now, that allow disabled workers to perform at the same level as their peers.

The miracles of the universe will bloom for those who dare to dream. In the words of Helen Keller, "I am not afraid of storms for I am learning to sail my ship." I am a woman, I am disabled, and given the right tools, Not only will I see, but also seek. Not only will I hear, but also listen. Not only will I speak, but my words will carry wisdom. Not only will I go the distance, but also go the extra mile."


Sunday, September 24, 2006

TETRIS 9/24/06

Tetris is one of my favorite games. I started playing Tetris on the advice of a friend after my car accident. As I concentrated on getting the little pieces to stack up, I was working on things like increasing my attention span and learning how to compensate for my vision-related perceptual difficulties. I found a wide-screen hand-held model. Anyone with a traumatic brain injury might consider trying Tetris.

For those of you who want to read about the history of Tetris and a bit of controversy surrounding it, here is one link: .

sapphoq healing traumatic brain injury

Tuesday, September 19, 2006

Sleep Apnea Strongly Linked to Depression

sapphoq healing tbi says: Here's some stats for those of you who have not heard me repeat them a gazillion times before:
The most common area of injury to the brain in a t.b.i. is the left frontal-temporal lobe region-- the region that is responsible for the regulation of seretonin reuptake and is thought to be involved in major depression.
50% of all patients with a diagnosed traumatic brain injury also have a sleeping disorder.
33% of all mental health outpatients have an UNDIAGNOSED tbi.

If you have been diagnosed with a traumatic brain injury and are suffering from irritractible fatigue, get to an ear-nose-throat specialist and get screened for sleeping disorders. I am glad I did!

Article pasted from

Sleep Apnea Strongly Linked to Depression

NEW YORK (Reuters Health) Sept 18 - Sleep-related breathing disorder (SRBD) has a robust association with depression, according to results of a longitudinal study funded by the National Institutes of Health and published in the Archives of Internal Medicine for September 18.

Based on their findings, the investigators advise that, for patients with SRBD, "Medical treatment (eg, continuous positive airway pressure therapy) or behavioral modification of SRBD (eg, weight loss) may help mitigate or prevent depressive symptoms."

While cross-sectional studies have suggested a relationship between the two disorders, there have been no population-based, longitudinal studies of SRBD assessed by polysomnography as a risk factor for depression, according to lead investigator Dr. Paul E. Peppard and colleagues, based at the University of Wisconsin-Madison.

The Wisconsin Sleep Cohort Study started recruiting subjects who were employees of state agencies aged 30 to 60 years in 1988. Subjects were scheduled to undergo overnight polysomnography every 4 years.

Degree of sleep-related breathing disorder was defined according to apnea-hypopnea index (none = 0 events/hour, minimal = 1 to 4 events/hour, mild = 5 to 14 events/hour, and moderate or worse as 15 or more events/hour). Assessment of depression was based on Zung self-report depression scale and with antidepressant use.

The study cohort was comprised of 1408 participants with 3202 sleep studies.

The authors observed significant dose-response trends of increasing risk of depression with increasing SRBD severity. After adjusting for age and gender, the odds ratio of depression when compared with no breathing disorder was 1.6 for minimal SRBD, 2.0 for mild SRBD, and 2.5 for moderate or worse SRBD (p value for trend < 0.001).

Fully adjusted longitudinal data showed that a two-category transition (for example, from no SRBD to mild SRBD) was associated with an odds ratio for depression of 3.3.

The risk of depression was not altered much by adjusting for other cofactors, such as daytime sleepiness or use of benzodiazepines, Dr. Peppard's team reports. Nor was the association between the two disorders reflective of specific components of depression.

Dr. Peppard's team speculates that, "If SRBD is causally related to depression, it seems likely that pathways initiating with cardinal features of SRBD, for example, sleep fragmentation and intermittent hypoxia, are involved."

Arch Intern Med 2006;166:1709-1715

Thursday, September 14, 2006

CSIndy: Personal space (September 14, 2006)

CSIndy: Personal space (September 14, 2006): "Personal Space
Spirit of the 'now' "
by Chrissy Roller

As a 12-year-old, Patrick Jones was on a swing when its chain broke; he fell down, head-first, and broke his neck. Decades and seven additional concussions later, cumulative damage has left the Scotsman with a traumatic brain injury.
"Once you have one, you're more likely to have another," he says. "A subsequent, lighter concussion can cause more damage than the initial injury."
Jones experiences chronic vertigo, fatigue and difficulties with attention deficit. He explains his condition as an inability to tune into one television channel; instead, he receives all the signals at once.
To avoid too much brain stimuli, Jones lives a bit like a hermit in Green Mountain Falls with his wife and 3- and 5-year-old daughters. His desire to keep things simple extends to his dress; he wears a kilt because it is "the most practical, comfortable garment a man can wear."
Yet Jones also creates detailed, fine art canvas prints fusing photography and poetry. Later this month, he'll debut his "photographic poetry" at the Brain Injury Association of Colorado's State Art Show in Vail.
His artwork attempts to capture 'the spirit of the 'now''; since he lives with short-term memory loss, Jones has no choice but to be solely in the present at all times.
"I have the time and space to discover and play with whatever God's trying to bludgeon into my brain at this moment," he says.
Still, for a husband, father and artist, some days are harder than others.
"It's hard to be around my daughter because of the toddler energy," Jones says. "I usually remember the concept of, OK they're toddlers. But on hard days, I have no idea."
He feels he has "maximized therapy from the medical world," so he has turned to sadhana therapy, a contemporary alternative method that mixes yoga, chiropractic care, and deep-tissue massage, or Rolfing.
"It's like living in a Category 5 hurricane," he says. "But with therapy, it's a Category 4.5."

— Chrissy Roller

sapphoq healing tbi says:
Rock on Patrick Jones!!!
I have experienced many of the same difficulties as Patrick Jones from my own traumatic brain injury. I have also found creative endeavors to be healing in their own right. The computer art that I do, working various puzzles, forcing myself to think, physical activity, chiropractic care, and solitude have all contributed to the cognitive progress that I have made.
As I continue on my path, I find that I am increasingly resistant to becoming traumatic brain injury. Part of healing involves expanding our horizons and destroying the "t.b.i. box" that we might have been initially content to dwell in. Survivors are commonly referred to as "t.b.i.'s" Newsflash: I am not a t.b.i. Or, to put it another way, I am not a traumatic brain injury. I HAVE a tbi and certainly I have some permanent neurology from it. But I can never be my labels. None of us really can be.
Here's to all people everywhere that we all understand that in a deep and revolutionary way.


Monday, August 28, 2006

LION'S MANE 8/28/06

While at the Hook on Great Chebeague Island on Thursday, I saw a large lion's mane jellyfish wash up along the sandbar during low tide. The jellyfish was rather startling in its' otherworld beauty. Nine lobes were outlined in iridescent blue and colored in crimsom red. Quite a contrast to the grey fog that surrounded the beach.

The jellyfish came aground and was still. One of the lobes had a rock embedded into the flesh. I peeled the rock out. Then I put four stones around the jellyfish and spoke to Yemaya. I left.

The next morning the stones remained but the jellyfish was gone. Whether it was eaten by other sea creatures, buried in the sand, or taken back out to the Gulf I do not know.

The embedded rock is traumatic brain injury. Even after removing the rock, the wound remained.

We are the jellyfish, grounded by our individual circumstances that led us to the beach of healing. Healing surrounds each one of us differently. If the healing does not come in the manner in which we expect it, what will we do? We can waste away or take to the ocean swimming the best way that we now know how.

~sapphoq healing tbi

Saturday, August 19, 2006


When I first came down with my traumatic brain injury, I didn't know I had it. The emergency room instructions didn't even mark the little box next to "possible concussion." After taking x-rays of everything but my head, I suppose there was very little reason to suspect that the oncoming headache might just be a result of my car being slammed into the side of a house at a high rate of speed. I went home with the message that all of this was temporary and that it would go away.

It didn't go away. After several false starts, an opthamologist muttered "post-head trauma" to his assistant and stalked out of the room. I had to look up the phrase on the internet. That was how I found out. It was a hell of a way to find out. I called the local RCIL.

After meeting with a disability advocate from the local RCIL and a consultation with a developmental optomotrist familiar with traumatic brain injury vision difficulties, I slowly began to navigate in the new world I found myself in. I had ocularmotor dysfunction and double vision in one eye and true photophobia. I got vision therapy. After nine months of vision therapy, I was able to tolerate the prism lenses that I need for my remaining vision problems. I had pain, severe pain. My twenty-four-hours-a-day-seven-days-a-week headaches eventually required three sets of nerve blocks [read: long needles injected into the back of my skull] to kill them off. A traction table and pool therapy mollified my back and neck pain. My worsening major depression [a common scenerio with tbi survivors with left frontal-temporal lobe injuries] got treated with the wonders of modern pharmacology. I had testing which demonstrated to some of the professionals involved what I already knew to be true, even if I didn't know the words. Any ability to multi-task-- except for driving a car-- was dead and not coming back.

And I fought. I argued with my husband, the doctors, the lawyer, the lawyer's assistant, VESID [OVR in other places], a bill collector [I refused to pay the $50 co-pay for the emergency room whose personnel forgot about my head], my former employers, a cognitive art therapist who allegedly might have gotten her phd from Pacific Western University, and insurance companies.

Early on, I stumbled into a traumatic brain injury survivors' chatroom on the internet. We spent quite a bit of time trying to remember the names of the seven dwarves. Some of my chat buddies told me that I would have to be in charge of my own rehab. That prospect was initially terrifying to me.

As time went on and no cognitive rehabilitation was forthcoming, I slowly took up the responsibility of my own rehabilitation. It was after all still my life. My life had been rudely interrupted; I no longer recognized my self; I'd had some personality changes that rocked my world. Yet it was MY life.

The folks in the chatroom directed me to free cognitive re-training exercises available over the internet, to an e-group of traumatic brain injury survivors where I went from fractured posts with no capitalizations and tbi-typese to caps, grammar, and proper spelling, and to readings about the long-term effects of mTBI. I became willing to explore.

In short order I learned how to WYSIWYG myself some simple websites, create links, cut and paste, download drivers and upload pictures, and fix some of the things my incessant button-pushing had done to the computer. I also started volunteer work at a local museum once a week for three hours, something I still do. I went to a couple of BIANYS conferences, visited some friends, and slowly began to clear up mentally.

After ten months of disagreeable disagreements with the VESID helping professionals, I quit. VESID is an agency whose website acknowledges to its employees that the customers are NOT in charge of their plans. Thus, I heard that my plan to return to school was unrealistic. And I was told that my best bet was to allow the nice job coaches from the agency down the road that also runs the sheltered workshop to "help" me. VESID was also insistent that I apply for Medicaid-- which I am not eligible for because of my husband's income-- so that way Medicaid would pay for cognitive rehabilitation for my tbi. I had needed the cognitive rehab months before but it wasn't forth-coming in spite of my best efforts. At that point, it wasn't needed. I had become fully in charge of my own rehabilitation and VESID was not helping me. VESID was hindering me. I needed that agency to get out of my way and I told them so.

I continued exploring the internet. I discovered blogging. One blog wasn't enough so I got several more. I developed friendships with some of my blogging buddies. I joined e-groups that weren't about traumatic brain injury. I found and . I discovered computer art and that I was good at it. I learned that Micro$oft was not the only option and I learned about open sourceware. I became interested in Linux. I decided that I wanted to work in the field of computer security.

Several times within this blog site and within others, I have told and re-told about my experiences with living with a traumatic brain injury. The telling is part of the healing. Today's message: I am in charge of my own rehabilitation. And so are some of you.

~sapphoq healing tbi

Saturday, August 12, 2006

The Secret Brain: The Erotic Journal of ArtfulDodger and Lady L: Fifty Artful Questions Answered

The Secret Brain: The Erotic Journal of ArtfulDodger and Lady L: Fifty Artful Questions Answered

This list of 50 questions I lifted from The Secret Brain who lifted it from a friend who lifted it from...

1. My roommate and I once: went to a local WalMart's to look for a pocketbook for his cross-dressing alter ego. We sashayed through the aisles at length openly comparing possibilites. As I remember, he settled on a tasteful faded blue-jean colored zippered shoulder strap model. One middle-aged woman fled from us in terror.

2. Never in my life have I: done crack or shot heroin and I hope I never do.

3. The one person who can drive me nuts, but then can always manage to make me smile is: my husband.

4. High School was: torture.

5. When I'm nervous: coffee calms me down.

6. The last time I cried was: I don't remember but it was sometime this year I think.

7. If I were to get married right now, my bridesmaids/groomsmen would be: -- one would have to assume that my present husband suddenly died and that I out-lived him.

8. Would you rather run naked through a crowded place or have someone e-mail your deepest secret to all your friends? Running naked sounds like more fun!

9. My hair: is naturally limp.

10. When I was five: I was cute and thin and blonde.

11. Last Christmas: we opened our presents and ate sticky buns in bed.

12. When I turn my head left: why is this question in here?

13. I should be: on the beach.

14. When I look down I see: the old wood floor.

15. The craziest recent event was: watching our oldest cat teach the kitten what to do with a mouse. She snagged a dead mouse from somewhere or other and shoved it over at him. When he went to shove it back or make motions to play with her, she growled. When he sniffed the mouse or jumped at it or threw it in the air, she made signs of approval.

16. If I were a character on "Friends," I'd be: --clueless as I hardly ever watched the show.

17. By this time next year: I should be on the beach.

18. My favorite aunt is: getting older by the minute.

19. I have a hard time understanding: why I should not curse as much as I want to as often as I want to.

20. One time at a family gathering: a cousin killed Peter Rabbit, put him in Shake'N'Bake, and then barbequed him. Very yummy!

21. You know I like you if: I drink coffee with you.

22. If I won an award the first person/people I'd thank: dad, gram, and Blondie the dog.

23. Take my advice: Have the courage to dream new dreams.

24. My ideal breakfast is: a vanilla yogurt coated PowerBar and some coffee.

25. If you visit my hometown: you would never know the glorydays I remember growing up there. The place where I live now-- you'd get bored quick.

26. Sometime soon I plan to visit: my friend Ellie in Vermont and my friend Philly Dave.

27. If you spend the night at my house: some animal would insist upon sleeping with you. And you would get to meet my frogs!

28. I'd stop my wedding if: one of us had a heart attack or something.

29. The world could do without: WAR and HUNGER and maybe RELIGION.

30. I'd rather lick the belly of a cockroach than: re-live my childhood.

31. The most recent thing I've bought myself is: one-half of an old computer [husband bought the other half] so I can revamp it and do stuff with it. And the idea of checking to see what stuff the old owner might have left on it is also appealing.

32. The most recent thing someone else bought for me is: dinner-- thanks Crow!

33. My favorite blond is: my dog Blondie.

34. My favorite brunette is: me.

35. My car must have a sign on it that reads: Go ahead, do something idiotic and piss me off!

36. The last time I was drunk: was on two beers and going into a blackout. Something I don't miss.

37. The animals I would like to see flying besides birds: humans. I would love to spread out my arms and zoom around the atmosphere. Now that would solve the gauging gasoline prices problem!

38. I shouldn't have been: so full of inertia during some times in my life.

39. Have you ever shaved your pubic hairs? Ain't telling. Though I have shaved my head into a butched-up version of a military brush cut for several years. Those were the days...

40. Last night I: did computer stuff.

41: There's this woman I know who: is dead cuz she killed herself in Boston.

42. I don't know: why I am doing this.

43. A better name for me would be: there is no better!

44. If I ever go back to school: I'll take up puters.

45. How many days til my birthday? Every day is my birthday. That means I ain't tellin' yas.

46. One dead celebrity I wish I'd met is: Audre Lourde. But alive thank-you. Not in a seance.

47. I've lived at my current address since: our marriage.

48. I've been told I look like: one of the women on "Cagney and Lacey."

49. If I could have any car, it would be: a working Chitty-Chitty-Bang-Bang. Or maybe a new Mercedes. One that gets super excellent gas mileage.

50. If I got a new cat tomorrow, I would name it: Sammy.



I found a free and legal program that teaches arabic words over at Every day I practice some simple words with the use of computerized flashcards and speech tools. Arabic writing looks very different from English. Spoken Arabic also challenges my brain cells because the simple words possess combinations of sounds which I am not familiar with at all.

English is my native language and I have been exposed to bits of Italian and Polish through relatives. I studied French and Spanish in school. I also know enough Ameslan to get by in a room of non-hearing people playing 30-up. But Arabic-- very different for me. Because it is so different, I am forced to pay attention. The engagement of my SN/VTA stimulates me to explore. Exploration can indeed be its own reward.

excerpt below taken from:

Novel environment sparks exploration and learning
Medical Research News
Published: Wednesday, 2-Aug-2006

Neurobiologists have known that a novel environment sparks exploration and learning, but very little is known about whether the brain really prefers novelty as such.
Rather, the major 'novelty center' of the brain - called the substantia nigra/ventral tegmental area (SN/VTA) - might be activated by the unexpectedness of a stimulus, the emotional arousal it causes, or the need to respond behaviorally.
The SN/VTA exerts a major influence on learning because it is functionally linked to both the hippocampus, which is the brain's learning center, and the amygdala, the center for processing emotional information.
Now, researchers Nico Bunzeck and Emrah Dzel report studies with humans showing that the SN/VTA does respond to novelty as such and this novelty motivates the brain to explore, seeking a reward. The researchers of University College London and Otto von Guericke University reported their findings in the August 3, 2006, issue of Neuron, published by Cell Press.

goto for the full article.

Wednesday, August 09, 2006


Two Additional Traumatic Brain Injury Patients Treated in Synthetic Blood Trial
COSTA MESA, Calif.--(BUSINESS WIRE)--Aug 9, 2006 -

Synthetic Blood International, Inc. (OTCBB:SYBD) today announced treatment of the seventh and eighth patients in its Phase IIa proof-of-concept Oxycyte(TM) study in traumatic brain injury. Consistent with the results in previous patients treated in this trial, Oxycyte administration in the two most recently treated patients significantly increased brain oxygen tension over baseline...

..."Currently, there is no direct therapy for the 1.4 million Americans each year who sustain traumatic brain injury," said Robert Nicora, Synthetic Blood President and CEO. "The results of this trial are exciting because previous studies have shown that increasing brain oxygen levels in patients with severe brain injury is associated with a better clinical outcome relative to cognitive and motor function. We believe the positive study data to date provides a significant basis for initiating a Phase IIb Oxycyte trial in a larger traumatic brain injury patient population."...

...Oxycyte is administered to patients with severe traumatic brain injury and a Glasgow Coma Scale score of 3-9. The primary purpose of this study is to demonstrate Oxycyte's ability to increase brain oxygen tension and favorably affect other brain chemistries that impact clinical outcome in patients suffering severe head injury. Additionally, the study will further assess the safety of Oxycyte when given by intravenous infusion...

[The complete article is available at:]

sapphoq applauds research in the field of brain injury which may result in demonstrable and measurable improved outcomes for future patients with brain injury. To be afraid of carefully designed technological clinical trials is to deny many human beings hope. Medical progress depends upon data which has an ability to be tested and reproduced. Although it may be popular among pagans and cowan both to deny careful evidence that some of our pet treatments and ideas about the way things work do not hold up under rigorous investigation, it remains vitally important that researchers continue to conduct such investigations. Fundamentalism of any kind along with its' twin sentamentality are the natural enemies of logical thought.


Tuesday, August 08, 2006

Operation Helmet: "Skin in the Game" | WesPac | Securing America Community

A big shout-out to those who are helping to prevent traumatic brain injury in our troops over in Iraq. ~ sapphoq healing tbi

Skin in the Game: Beyond Yellow Ribbons
by Dr. Hilary Stallings

Since my brother Chris was deployed last semester, I’ve learned much about being part of a military family. Most significantly, I’ve grown to understand that the war is always with you; you’re always aware, as the military says, that you have skin in the game.

Simply put: it’s consuming. I find myself watching the news with such urgency or repeatedly looking over Chris’s consistently benign e-mails. There’s just this hope that by being diligent, you’ll hit upon some small reassurance that he’ll be OK and come home whole. But, sadly, this search only yields an overwhelming sense of helplessness, a loss of agency that I suspect many of us share. Regardless of political ideologies, feelings about the war or direct links to deployed military members, it seems people would like, in a real, tangible way, to “support the troops.” The problem is how?

For me, this answer came in an unexpected fashion. I kept hearing about fatal or life-altering head wounds: something like 59 percent of troops who survive an improvised explosive device, or IED, attack suffer traumatic brain injury, most commonly from the enormous concussive effects of the blast. Fortunately, before Chris left, I also heard Capt. Bob Meaders, M.D. (U.S. Navy, Ret.), speak about a retrofit for helmets that can drastically, drastically reduce these numbers.

This is a battle of bombs, not bullets; so, for me, there was no way my brother was deploying without one. Immediately, I e-mailed Dr. Meaders, and a helmet insert was shipped that day. Chris confirmed he received it, thanked me (commenting on the increased comfort level of the helmet), and that was it.
I didn’t think much about it until a few months later when talking with my father; he asked me in an unusually quiet, still voice whether I thought Chris was using the insert. His angst in anticipating my answer had actually robbed him of normal inflection. Certainly, this $70 helmet retrofit was helping more than Chris get through the deployment.

In retrospect, that discovery seems so odd. Of course I realized my parents appreciated and were thankful for the upgrade. I knew that. But I had not internalized the depth of their feelings, nor did I understand that in their minds, knowing Chris had this piece of equipment somehow tipped the scale in favor of his safe return—that now, along with his good judgment and strong training, he had one more thing going for him. At that point, I decided to find a way to help give this same much-needed hope to the parents of Chris’s 35 men. Their children, too, needed this safeguard.

So the fund-raising began, starting with a series of mass e-mails that explained how
Capt. Meaders is working to provide ALL military deployed (Iraq and Afghanistan) the inserts for free, but that takes fund-raising, and consequently there’s a backlog (more requests than money)…. The inserts cost $70, not an insurmountable sum…. What I’m asking you to do is visit . Capt. Meaders has material about the actual product, the military’s approved use, tax information, etc. You will find him compelling.

I solicited everyone I knew, everyone my parents knew, even my friends’ parents and their friends, moving then to letters to editors and calls to representatives. Casual remarks of interest were always followed with a presumptive, “Make the check out to Operation Helmet” or “I’ll be glad to come back after payday.” And it worked. People were generous, both in their personal contributions and in passing along the word. When we got close to the target amount, Dr. Meaders mailed Chris 35 inserts, which were delivered to him far away, in the desert.

Later, sitting in an Internet café in a land where the native Texan has said that the 90-degree nightlows now make him cold, Chris wrote the following, which unintentionally inspired a campaign to retrofit the entire company.

We just got the inserts late last night in the mail….but when i got my platoon together and i explained the whole thing to them from dr. meador (that was his name right) being a passionate advocate of these things, and then how you heard about them and wanted to make sure every marine in my platoon had them and then all the benefits they provide (from concussions to stopping bullets from bouncing around inside the helmet) the marines were in a kind of shock that someone they didn’t know would go so far out of their way to provide something for them.
They knew they weren’t cheap and they started doing the math in their heads and figuring the numbers out. they were totally amazed. they were so thankful. marines are wonderful, in that they will always do what they are told, and they will do it, tired, hungry, sleepy, moody, wet, miserable, in pain, and everything else. and they will usually get it done with far less than any other military branch out there. marines are born to fight and get the mission done with less and do whatever it takes to make sure it happens with the proper outcome. so when they found out you were out there running around raising money for them to get inserts they could have gone without, but having just helps them and provides them with that much more comfort, ree, you should have seen how thankful they were. it was truly awesome, and in a way that cookies and magazines and candy (though appreciated) will never be because those things will not actually go out and help them accomplish their mission. and you and your efforts made it that much easier for 35 marines….
ree, you are truly awesome, and should be proud of this. you made 35 (36 including me) grunt marines extremely happy and we each owe it to you and those who helped you and those who do similar kind things to keep going…

As you can see, with the help of many giving friends and strangers, this is how I have been spending my summer: raising funds and awareness— basically, trying to put the war at the forefront in our minds again. This is a difficult challenge as the time frame seems to stretch. But the people over there, on the ground, in the heat, away from their loved ones, are all our brothers, sisters and children. We all have skin in the game.

If you too would like to order a helmet retrofit for a family member or friend, visit Meaders’s Web site, Donations to the troops in general are welcome, and remember your gift doesn’t have to be grand. Every single dollar helps. At the site, you can view Meaders’s recent interview on “Lou Dobbs Tonight,” which provides a succinct description of the program.

You can also talk to me. I know this may seem a bit strange, privately having to equip the military, but that’s the reality of this war. Again, I am asking that we put politics aside in this case and simply support the troops.

Dr. Hilary Stallings is assistant to the dean of the College of Liberal Arts. Her brother, 2nd Lt. Chris Frey, is serving with the U.S. Marines in the Middle East.

How you can help:
Operation Helmet is a nonpartisan, charitable grass-roots effort that provides helmet upgrade kits free of charge to U.S. troops in Iraq and Afghanistan. These helmet upgrade kits consist of shock-absorbing pads and a new strap system.
Operation Helmet depends on tax-deductible donations. For $75 to $100, depending on the manufacturer, added safety and comfort can be provided for a soldier, but donations of any amount are welcome. The donation can be designated for a specific branch of the military, a particular unit or an individual trooper.

Dr. Bob Meaders, a Vietnam veteran, began the Houston, Texas-based Operation Helmet in 2003 when his Marine Corps grandson requested upgrade kits to make his unit’s helmets safer in combat. To date, Operation Helmet has sent upgrade kits to more than 19,885 troops.
One hundred percent of all donations go toward helmet kits. There are no administrative costs deducted. For more information, visit
Note: Story originally published in the July 3, 2006 issue of The Record, Middle Tennessee State University.