Wednesday, December 26, 2007

Brain Injuries and P.T.S.D. 12/25/07

Several articles have cropped up declaring that brain injuries "cure" Post Traumatic Stress Disorder. In reading through them, I found that what they meant to say is that brain injuries demonstrated in either of two specific areas of the brains of research subjects lessen the incidence of P.T.S.D. The two areas are the amygdala and the vmPFC or the ventromedial prefrontal cortex. The research results reported are actually fairly impressive. Folks with insults to the amygdala had zero incidence of P.T.S.D. And only 18% of folks with insults to the vmPFC developed P.T.S.D.

No one is planning to go out and deliberately inflict brain injuries upon those with P.T.S.D. The idea of surgery to insert clips to dull activity in one or both areas is rather uninviting. Use of magnetic stuff is more palatable but also more suspect as junk science.

Nothing reported over on Medscape yet so it is too early for me to get excited.

sapphoq healing t.b.i.

Friday, November 30, 2007

Circle Work with Insects

I have been thinking about stealing spiritual practices from other cultures, particularly [in the Untied States] the indigenous tribes of the Americas. There are new agers, white lighters, wiccans, and some folks who don't know what else to do with their money who are all souped up on shamanism, medicine circles, and other practices which they believe to be the real thing. And because there is an average of a sucker born every minute, there are lots of grown up suckers willing to part with their hard-earned cash to go on vision quests. And there is a market for those glossy slick-backed "Medicine Cards" with the nice drawings of Bear and Shells and stuff on them.

Awhile back, I posted to an e-group which I no longer belong to asking about how come no one ever claims the cockroach as their special animal. Everyone wants wolves, lions, tigers, bears, eagles, buffaloes, deer, frog. But absolutely no one wants to have any sort of spiritual relationship with a cockroach. The cockroach is the most successful evolutionary experiment, able to adapt under a myriad of conditions, and quite the traveler too. The spiritually bent should be fasting and begging for Cockroach to be their power insect or totem animal. But alas, not.

Now and again, there are folks who assign mythical beasties to the four cardinal directions or elements in a working circle. Dragons and unicorns abound, right along with the more traditional undines and salamanders. Phoenix and sirens, gargoyles and mermaids yet nary a real insect is noted.

For those who are so inclined, I present the Circle of Insects!

earth: deer tick, cockroach, wood bee, head louse, termite, house fly, ground killer wasp

air: flea, white-faced hornet, pubic crab, fruit fly, horse fly, jumping spider, hover fly

fire: firefly, honey bee, wasp, sweat bee, fire ant, red ant, scorpion

water: skate, diving beetle, mosquito, springtail, noctuid moth, leech, stone fly
sapphoq healing t.b.i.

Thursday, November 22, 2007

Job Ideas for spike q. poet

*Disclaimer: not necessarily approved of by the local unimaginative VESID/O.V.R. office*

1. Grow hissing cockroaches, crickets, and earthworms-- may distress lover.

2. Photograph frogs.

3. Breed frogs-- too technical. Apparently frogs in captivity can't figure out how to do it without
human intervention.

4. Rescue unwanted or hurt amphibians-- lover thinks fifteen frogs are enough.

5. Raise llamas--- may really distress lover.

6. Trail guide and llama trekking-- requires llamas.

7. Breed snakes-- lover will move out.

8. Receptionist at very quiet office with no telephone lines.

9. Starving artist-writer.

10. Inspirational speaker.

11. Career coaching.

12. Have year round yard sales.

13. Sell things on the web-- requires things that people will want to buy.

14. Drive a truck-- spinal problems will rebel.

15. Teacher's aide-- hate kids in groups of more than one.

16. Landlord-- been there, done that, ain't doing that to myself again.

17. Event planner-- poor organizational skills.

18. Be a clown or stand-up comic.

19. Start a new religion-- bad karma.

20. Grow flowers in a greenhouse-- requires greenhouse.

21. Professional poker player.

22. Raise corn, hay, and other stuff-- requires farm.

23. Own a human services agency-- would rather manually shovel cow shit.

24. Restaurant hostess at a very slow restaurant.

25. Cook at a small diner-- people will die.

sapphoq healing t.b.i.

Monday, November 12, 2007

Four Years

Last week I passed my four year anniversary since my car accident and my traumatic brain injury. I thought somehow I would be working by now. Although I am closer to working now than I've been. Yeah, I am writing a novel and that is cool. To me though, that doesn't really "count" until the contract has been signed and an advance check is in my sweaty hands. I have one potential job substituting for a dishwasher should they get sick and another possibility to work for a friend who is manager at a restaurant. I don't think I will mind washing dishes once in awhile. Working at the friend's restaurant-- well, I gotta start over again somewhere. I haven't even been able to get an interview to deliver newspapers. So I will take what I can get and remember it is just for now, just until I can find something else.

I still have my vision problems, the mild expressive aphasia, and the occasional vertigo. As far as medical experts say, traumatic brain injury is permanent. We improve over time at some stuff, especially if we keep working at it but the basic brain injury itself is there and will be there. Folks say that "the brain can regenerate isn't that amazing?" sort of thing until I am sick of hearing it. Again, I will tell yas that yes, some neurons can regenerate however they do not always reconnect to the correct halves [causing cognitive slowdowns] or at all to anything [causing a central nervous system tremor which yes I do have].

I will never be who I was. I won't lie for the sake of the comfort of others and claim that who I am is a new improved model because it isn't. I don't believe that "all things happen for a reason" or that "I'm right where some god wants me to be" or that "there are no true coincidences." What I think is that life is sacred-- neither fair nor unfair-- and that it is the finite part of our selves that requires and maybe even demands meaning, thus we create it. I don't particularly feel bound by any compulsion to have reasons and lessons for learning. I think that life is far beyond our petty little explanations. Most other folks I know find comfort in believing that there is some sort of grand plan. That stuff doesn't help me though so I dumped it.

Some things have improved. My hearing-- which was supersonic before my accident and right on the borderline of needing a hearing aid or two afterwards-- has re-established itself into the supersonic category as per the last audiology test this summer. The addition of a c-pap machine after two sleep studies and a diagnosis of sleep apnea has really helped me to have a life [although it takes me much longer than average to get into REM sleep, at least I am dreaming again at night]. I keep working on my aphasia and now most folks don't notice it. I got involved with an incredimail creators' group [thanks Jeremy Crow] and that has been of immense help to me in restoring motivation.

If the accident didn't happen, we would have been better off financially and I would not have had my career viciously kicked out from under me. If suffering builds character and strength, I certainly could have done with a bit less of both of those things. In a perfect world, folks who smoke pot would be picked up by the magic yellow submarine bus and driven anywheres they had to go. [The driver who ran my car into a house was high on marijuana]. In a perfect world, we wouldn't need lawyers to protect us from our places of employment after we get hurt, little kids wouldn't be abused or die of starvation and diseases and all stuff like that. But it is not a perfect world. So I just have to do the best I can [most days] with what I got. As Nathaniel Branden would say, "It is what it is."

By this time next year, I hope that my novel will be written and submitted. I also hope to be working at least part-time at a job that I can tolerate. Still be married and in love with my husband and he with me. Saving money for my next cross-country trip. [I want to go every year or every two years for the rest of my life]. And still enjoying my animals, the woods, and life.


I am writing a novel, as I've said before and thus am behind once again in visiting all of your blogs and commenting. Sorry for that. I will get to visiting all of yas to leave comments over the next few weeks or so.

And anyone who has a dog, if you haven't watched The Dog Whisperer, you ought to give it a whirl. He has most excellent ideas about dog psychology and communication. My current dog who is really angelic has become even more perfect since I started doing some of the things he suggests.

Tuesday, October 09, 2007


The wonderful folks at Medscape bring an article detailing a questionnaire which NCNeuropsychiatry P.A. has made available on-line to medical personnel which their patients and/or family members can take. It has 207 questions which are correlated to groups of symptoms and specific conditions indicated by them.

The questionnaire is notable for traumatic brain injury patients because it includes a short test for problems related to concussion. Results below for a fictitious patient who presents with moderate disability from a traumatic brain injury have been directed pasted from the test site:


[end of cut and paste from site]


It is noted that report of symptoms does not indicate that the patient has or doesn't have any of the conditions associated with them. Some patients may over-report symptoms and some others may under-report. The test results of the fictitious patient above may indicate perception of mild problems with attention, mood stability, fatigue, and sleep. The symptom clusters aggregate into a possible clinical picture of the presence of post-concussion difficulties as well as mild autism and Asperger's. An experienced qualified clinician can utilize the testing results in fact gathering and diagnostic interviewing. Because the patient can re-take the test throughout treatment as well as at termination, there is a direct way to measure any progress in reduction of symptomology.

NC Neuropsychiatry P.A. offers evaluation, treatment, and medication management for those people who have symptoms of a variety of disorders including but not limited to serious psychiatric conditions, learning disabilities, cognitive impairments, A.D.D. ad A.D.H.D., and broad autism spectrum disorders as well as traumatic brain injuries. Clinicians are researchers as well as qualified specialists and the practice also offers clinical trials.

The website itself is easy to read and easy to navigate. From the well-written section on traumatic brain injury, I found that traumatic brain injury is one subset of acquired brain injuries. The practice also offers for purchase a series of tests which measure things like working memory, ability to shift tasks, and flexibility in cognitive tasks. The tests may also be accessed from a computer [the clinician can download a complete battery] and norms are included. The series of tests together is referred to as the CNS Vital Signs Assessment Battery. The things that the tests propose to measure have implications for traumatic brain injury patients and for those with mild cognitive impairments, A.D.H.D., and stroke.

The subject of words, definitions, and labels has recently come up in two e-lists I belong to which deal with brain injuries. One of the ideas that was expressed was that researchers are only in it to "make a name" for themselves thus they have a vested interest in the nomenclature associated with brain injury.

From my own perspective, it is vitally important to recognize the medical terminology associated with brain injuries. Common civilian words that are used to describe brain injuries and the effects of are not adequate when reading peer-review research studies. The N.C. Neuropsychiatry P.A. website illustrates the commitment of the researchers associated with that practice. Doctor Johnson has a long list of publication credits and Doctor Gaultieri's is even longer.

Researchers do not work in ivory towers. With the increasing religiosity inherent in the U.S.A. government decisions of who gets what funding as well as competition for research dollars, researchers by and large do have to possess a commitment to the subject of their research as well as to displaying verifiable results.

I encourage anyone reading this who is a medical consumer with a specific chronic condition or disorder to familiarize yourselve with medical terms and research protocols. Medicine continues to advance at a rapid pace. We can become our own best advocates if we are willing and able to gather information in order to communicate intelligently with the professional helpers on our medical teams.

Financial Disclosure: sapphoq has never been a patient at N.C. Neuropsychiatry P.A. located somewhere or other in North Carolina. Neither they nor Medscape paid sapphoq for the nice things she said about them. Thank-you.

Saturday, October 06, 2007


That excitement of finding new places or re-finding old ones.
Pieces of me scattered in places I had never been.
I set off in April alone to find those pieces and indeed
they have been found. I knew. Never any doubt or question.

In my brain, I have snapshots of the many places I've been.
Places I have loved and places of tragedy or apathy.
Sacred places and places that have lost their holiness to me.
I have lived and loved and died many times over.

I have always been able to navigate through fairly well even those cities which I've visited after lapses of decades.
I remember how to get around neighborhoods and I can still see houses, apartments, stores, trees.
There are very few maps in my world; and very little need to ask strangers for directions.
An acute sense of direction combined with almost no sense of distance and a marked indifference to time.
Time leaks onto the fabric of the pages of my life,
muddying the words therein. I can still sing the words and I do.
I can read upsidedown with no problem.
I can write with two hands in various combinations of left, right, forward, backwards, rightsideup, upsidedown.
These things I have always taken for granted.
A long list of "Can't everyone?"

Just like the phone numbers from childhood and the addresses I can still recall.
First memory-- learning how to walk. And the revelation of a secret tryst inherent.
I was on the second floor of a house being encouraged by an old Italian man with missing fingers
to walk around the coffee table with no hands to steady me.
That old Italian man turned out to be the father of my step-father.
That is how old the affair of my mother and step-father was.
She was still married to my dad at the time.
From that memory, I understood how the two of them had met.
My mother had happened to hire an old Italian woman as a babysitter.

Odd. Almost everyone with a traumatic brain injury winds up with deficits in memory.
I am not one of those. I tested in the 99th percentile in both working and long-term.
My t.b.i.-er friends all tell me that they can't remember. I can't forget.

I did forget for a time who I was before my brain injury.
I could not describe my self pre-bonk.
And then random memories of my life began to return at random times.
Not anything I'd been counting on or even expected to happen.
More memories to add to an already bulging mental scrapbook.

Oh, I did forget how to cook.
The burnt pot of wilted herbs in a smoky kitchen told me so.
Cooking, like so many other things now, not automatic pilot.

I cannot take much for granted.
No. Having walked with death, I've been catapulted into life.
Vision like a permanent acid trip took some getting used to.
The world was too fast. I got used to my own pace, my own music.
I've "adjusted." Those who say otherwise know not of what they speak.
Yes, today I can describe my character traits before the accident.
Today, that doesn't feel important.

My mother told me when I was moving out, "You can never go home again."
I thought that meant she would not take me back in. I was too traumatized to care.
She had lost me through her abuse years before I was able to leave her house.

I understood a different meaning to not going home again many years later.
That people and places change, that my memories of those people and places
were expected to dull to inaccuracy, that returning does not render magical healing of heartbreak.
She was wrong.
So fundamentally wrong
in ways that I cannot explain and don't want to.

I have gone home again.
To places where I had never been before.


Thursday, September 20, 2007

spike manifesto

I am spike. I am who I am and not who you want me to be. I was never good at being what you wanted me to be and now I am even worse at it. So I gave that up. I have my own way of being, my own dreams. I have my own timetable. What you think I should be able to do by now means nothing in my world. I am healing. I am experiencing a remarkable albeit slow recovery process. Nothing is automatic anymore. Being on manual overdrive is the way it is for me now. I march, skip, dance, and fly to the beat of my own steel drum band.

I am spike. I don't "look" disabled. Casual observers do not recognize my double vision in one eye or my physical pain or my expressive aphasia which I have learned to work around. Only doctors note the hyper-reflexia and the ocular-motor dysfunction, sleep apnea and sometimes the fatigue that plagues me. I take naps almost daily. When I don't, I fall more on uneven ground. I don't like falling. So I've learned to manage my energy and to take naps. I can be a citizen of the universe on those days when I am not screaming with fatigue. On days when I exist in a swirl of fatigue, I need solitude and rest. I am comfortable with my own company. This is my brain, my life. Not yours.

I am spike. I do not care much for instructions on standards or how to behave properly or things like that. I compare myself to myself, not to some impossible standard of normalcy. I know that there is much to be said for blending in, for fitting in when and where I am able to. The world does not owe me a living. I intend to work at something just as soon as I can. Try hard to remember that a traumatic brain injury diagnosis means no open machinery, period. That test for factory work that you are dieing to give me is not going to happen. I cannot do it. I am not equipped to work in a factory. Nor am I able to stand on my feet cashiering. Any ability I had to multi-task is dead. I have not given up on myself. I am my own best advocate, not you. You are someone who is being paid to offer a service. I don't engage in false displays of admiration and gratitude when you the professional "helper" finally do something that is in your job description. You don't get to live vicariously off my back any longer.

I am spike. Do not tell me that "mind matters" or show me your stupid green rubber bracelet. I am not placated by meaningless empty platitudes. Do not tell me that you "know" what or how I feel unless you have had to have three sets of six very long needles stuck into the back of your skull in order to ease the severe constant t.b.i.-induced headache. We are all alone in our own skins. You better hope and pray with all the fervor that you possess that you never have to deal with the things I've had to face in the past almost three years. You may not be able to get through it as well as I have.

I am spike. I cannot bend. My body doesn't allow it. When I am able to work on the garden or rip up carpeting, I have to do it my own way-- sitting. Do not criticize my lack of speed unless you are willing to offer your help. I am not emotionally invested in doing anything because you say I should or at your whim. This is the way of it. I am also not interested in hearing any wangst about "how difficult it is to live with [someone who has] a t.b.i." I don't complain loudly about how hard it is to live with a neuro-typical. Take your wangst to a support group for families and friends. I claim my right not to listen to it and not to get caught up in it. I have no time for bullshit.

I am spike. I am not interested in your pity or your displays of affection. I do not want to be swallowed in your vampiric bear hugs or have the life sucked out of me by your neediness. I have no energy to spare. I don't care for your crises or your drama. If you cannot relate to me friend to friend, I will reject your overtures. Anger is my truest friend. If you are afraid of my anger, chances are that any interconnection between us will be limited. If you are looking to get me "healed" of my anger or want to convert me to your religion or your way of being, save your breath. If you want to be my friend, you must remember that I am living on borrowed time. Those of us who have a nodding acquaintance with Death are forever changed. I offer no apologies for my attitude. I am not a t.b.i. I am spike. I can be a great friend. Or I can leave you in the dust as I and my dog go wandering off into the sunset happily.
I am spike.

sapphoq healing t.b.i.

Wednesday, September 12, 2007

Hints for Living

I declare myself inspired by both
ranting dyke:
and tigresslilly: .
Kudos and thanks.

Hints for survival while employed by a human servitude agency:

1. Keep looking for another more saner job. Sanity of existence is one benefit that you will never hear about at your human servitude agency.
Sanity of existence is priceless.

2. Don't go to office parties or dinners unless you wish to be accosted by the c.e.o who absolutely must dance with you while the d.j. is playing "It's Your Thang. Do what you want to do..." and experience him shaking his thang.
Alcohol does not account for all random acts of bad behavior.

Remember that you have a life. The other workers do not know this. Keep it up front. Say no to overtime. If you never say no, then your yesses won't mean anything at all.

4. The people you work with and for are not your buddies. When push comes to shove, they will rat you out in order to gain brownie points.
Anyone who says, "Trust no one here. Except for me." upon first introductions should be watched.

You are expendable. When you wind up in a car wreck, the human servitude agency will quickly forget that you too are human. Instead, they will call you and argue with you about meaningless paperwork when you are sleeping 20 hours a day because now you have a traumatic brain injury. They will also fax you a safety committee form to the place where your mate works. The form will ask, "How can this accident be avoided in the future?" Knowing that the answer is something akin to, "Ensure that all those who get stoned are picked up by the magic bus instead of being allowed behind the wheel of an automobile," give the paper to your lawyer so he can promptly lose it. When you are down and out, the human servitude agency will not watch your back. You are an insurance
liability now.
All insurance companies wish you would go away or drop dead and so does your former employer.

Hints for getting over your loss of a career after a bad car wreck and traumatic brain injury:

1. The helping agency which is supposed to help you get gainful employment that you can do is also a human servitude agency. Remember that.
Do not allow any organization or person to take control of your life and how it's gonna be. Advocate for you. There is a high probability that no one else there will.

Get rid of toxicity, especially toxic people wherever and whenever you can. They are a strain on the brain. Become involved in disability culture instead.

3. To badly paraphrase the folks at ,
life is different after a traumatic brain injury. It is still very much a life. Celebrate life.

4. Surround yourself with cute doctors. Fire all ugly docs and replace them with eye candy.
When you don't feel well anyways, pretty helps immensely.

You are not expendable. You are sacred. Remember this always.

9/11 came and went. I woke up wanting to cry. It is six years later. I grieve for all of us having to live on this planet and trying to kill each other off.

9/08 came and went. 9/8 is my birthday but not the day I was born in a hospital. I have been free from active drug addiction [including the drug alcohol] since 9/8/80.

sapphoq healing t.b.i.

Tuesday, August 28, 2007


Excuses-- something that I think about quite a bit and guard against. Making excuses can be confused with that amotivational stuff that I fight with due to the t.b.i.

Do I make explanations for myself out in public? Usually, I consider things as "need to know info." The casual human being I meet in a store does not have to know that I have mild expressive aphasia. My talking is too soft but understandable even if I miss a word and find a similar one to stick in there instead. The jogger that appears down the street does not need to know that I might see him as having two heads, two necks, four arms, two trunks somehow connected to one waist like a morphed out hydra. [The double vision in one eye thing].

It is important for me to know when I am tired and to pace myself so my energy is more even.
And important for me to know when taking time for healing turns into a convenient sort of laziness and unwillingness to extend myself and get out there and job-hunt [again]. Maybe I can't do what I used to do. Maybe I can do something. Even if it is part-time, "something" is better than sitting home crying about my unlucky break and all of that. Taking risks is risky.
And yes, I have used my own t.b.i. as an excuse not to take risks because I am afraid.

The c-t scans and the m.r.i.s don't always show the extent of the damage. Mine showed the specific damage in the left frontal-temporal lobe but not the stretching of the axons that were part of the more diffuse damage. No way am I allowing radiation to be shot into my head [PET or SPECT scans] even if some insurance company would like to spend that kind of money.

The hyperreflexia and double vision in one eye,
the refusal of my eye muscles to move unless forced,
the inability of my eyes to work together or with my brain,
the borderline hearing loss [which has now cleared up],
the difficulty navigating on uneven ground,
the true photophobia,
the objective vertigo [not dizziness, not a balance problem--
the room slides to the left],
the pervasive lack of ability to multi-task;
all are things I live with daily.

I don't get to add those things up in an attempt to justify quitting. I don't get to whine about things being harder for me than the average person even if sometimes they might be.

I am alive and I shouldn't be. My car was rammed into a house at a high speed. I opened the one door that wasn't stuck and let myself out of that car. The last neurodoc didn't understand why I "walk so well" as he put it. My hyperreflexia is very high on the spastic scale. I'm glad he wasn't checking me out in the emergency room. Else I might not be walking today. I walked because no one told me that I shouldn't be able to.

I was lazy before my t.b.i. That didn't go away. I got another crack at life. Maybe I can do it a bit better this time. I hope so. I've got to try. And that means attempting to blend in whenever possible and being as productive as I can be in whatever form it takes. It means not blaming others for my problems. It means being able to see my self as a sacred human being, not as my symptoms or my labels. It means ignoring those who tell me that I am not able to. I can wallow in my self-pity or I can turn my excuses into determination to get back up again and get going. I have to keep striving. I am part of this society, a citizen of the world, and I intend to make my contributions to the society that I live in.

sapphoq healing tbi

Monday, August 20, 2007

A Reminder

I had another t.b.i. reminder on Saturday when I could not remember how to connect to the library hotspot from my
laptop. Damn it. Some things I have always had and some things I haven't. Making the same mistake over and over
sucks. It was only after I was in bed to take a nap that I remembered which button I was supposed to click.

There are worse things in life to be sure.

Maybe during my next snit, I will be able to remember that.

sapphoq healing tbi

Saturday, August 04, 2007

Don't put those books on a chair...

Late afternoon husband and I went to a bookstore as we do almost every Friday. It is one of those bookstores with overstuffed chairs and couches distributed throughout so that way I don't have to stand in the aisles to read the books that I have no intention of buying. It also has a coffee bar and tables and cafe chairs.

Usually I go through the bookstore and meet husband at the cafe with my bunch of books and magazines to thumb through. Husband comes back with four books. We sit at the too small table. Husband goes up to get the drinks. I like rasberry-chocolate freezes and cherry-chocolate freezes. In the winter, I like hot chocolate with a shot of coffee in it. Husband likes caramel freezes. In the winter, he likes hot coffees. I usually snag an extra chair and pile the rejects on it. This has not been a problem in the more than ten years that I have been going to bookstores in this area.

A man in a brown suit made his way over to us. He stared at the 14 books and 5 magazines which I had gone through and which were in the reject pile on the chair. "It is against the rules to put the books on a chair," he told us seriously. "The chairs are for other customers to use."

"I don't see a crowd of customers waiting for that chair, but thanks for telling us that," I said. "Are you buying any of those books?" When I indicated that I wasn't, he said, "I have to put them back," and he walked off rather stiffly with an armful.

I don't mind following the rules if I know what they are and if they make some sort of sense. But that rule was (a). one I had never been confronted with before in my entire life of going to bookstores and (b). made no sense, especially given that there were no customers who required a chair. The bookstore was almost empty. There were four other customers in the cafe area; and three adolescent gamers sitting in the overstuffed chairs discussing the idea that the next president has to have both charisma and experience.

The man in the brown suit had a fancy tag by which I took that he was some sort of mucky-muck manager. When he told us he had to put the books back, I couldn't figure out why he was telling us that. We were done with them. It appears to be the habit that most people leave stacks of unwanted books around. If he hates his job that much, he can always go get hired by the human servitude agency where I used to work and find out what real aggravation is. Those were some of my thoughts. I refrained from saying things that I really wanted to say since I don't like cops being called and I do want to go back there again sometime.

Rather baffling it was.

Tuesday, July 17, 2007

The United State Army has released a teaching program which will aid soldiers and their families in recognizing the symptoms of both mTBI and post-traumatic stress disorder. 1.2 million soldiers in groups of 40 to a class will be put through the mandatory training. Both the Pentagon and the American Psychological Association claim that army mental health services are lacking in funding and staff. Teaching resources are available for download at the army site to soldiers and to Family Readiness Group Leaders, but not to [any other] civilians.

I am glad to see the Army [at last?] taking a pro-active approach to both head injury and p.t.s.d.

sapphoq healing t.b.i.

Sunday, July 01, 2007

Something Different

This is the results of a "brain test." Non-scientific but still fun. sapphoq healing t.b.i.

Your brain: 60% interpersonal, 160% visual, 40% verbal, and 140% mathematical!

Congratulations on being 400% smart! Actually, on my test, everyone is. The above score breaks down what kind of thinking you most enjoy doing. A score above 100% means you use that kind of thinking more than average, and a score below 100% means you use it less. It says nothing about how good you are at any one, just how interested you are in each, relatively. A substantial difference in scores between two people means, conclusively, that they are different kinds of thinkers.

Matching Summary: Each of us has different tastes. Still, I offer the following advice, which I think is obvious:

  1. Don't date someone if your interpersonal percentages differ by more than 80%.
  2. Don't be friends with someone if your verbal percentages differ by more than 100%.
  3. Don't have sex with someone if their math percentage is over 200%.

Link: The 4-Variable IQ Test written by chriscoyne on OkCupid Free Online Dating, home of the The Dating Persona Test

Friday, June 29, 2007

Letters to My Self *suicide, trigger*

Dear Heartlove,

Forgive me, if you will, my familiarity. I have known you for your whole life, although--like one in the deepest of comas-- you have consistently failed to recognize me. I am skin of your skin, blood of your blood, your breath, your everything. And you are mine.

You say you are endeavoring to fit your life together like a puzzle. Yet the puzzle has no pieces and nothing can be glued together. Stop that.

Here is something for you that you can do. Throw out those old puzzle boxes. Your life is an intricate weaving together of diverse elements into patterns. Patterns that defy the status quo. You are you.

You are not your labels, problems, disabilities. You are you and only you. There is no path for you to be on. You are a trailblazer who has been growing new legs. Get up now and walk on those legs, receiving the strength that is yours and yours alone. Then go out and share that strength. Only in the interconnection of all life will you ever find happiness.

Love Always,
All That Is

Dear "All That Is,"

What kind of stupid-ass name is that? I don't much like you. You and your talk about interconnections and weavings and patterns.

I have suicidal thoughts. They are my Plan B. Plan B is persistent and seductive in her constant whisperings. Plan B says,

"You won't find any jobs. Look, see there are no state jobs waiting for you in the wings. You are
scheduled to language away trying to catch up to the grindstone. There is poverty and degradation .
I'm a secret Plan B. You mustn't tell. Anyone."

You try living with Plan B, always there in the background with her twirly sheer skirts and flirty ways. It's not easy to be me and I may die. Still, it is a lot better than being you. You pompous assinine zipperhead. And by the way, I am no one's "heartlove."

In Total Apathy,

Dear Heartlove,

"I always have options. I just don't always know what they are." Didn't you used to say that?

All That Is

Dear Pompous One,

Bugger off.


Dear Plan B,

You are not a real Plan B. I name you Imposter. You are a collection of lies and old tapes. I repudiate you.

I may not know where I am going. I do know that I will make it through this.

You can bugger off too, along with that "All There Is" Pompous Asshole.


Monday, June 25, 2007

Excuses, excuses, excuses

Anthony O'Toole told the court that an old head injury [not several pints of alcohol] caused him to have seizure activity which necessitated the calling of an ambulance and himself being intubated in order to maintain airflow. The stupid judge bought that story. The cop who arrested him for public intoxication apparently knew better.

To those of us who have a traumatic brain injury or any other disability or belong to any minority group-- the way to acquire equal protection under the law is through taking equal responsibility [i.e. the same responsibility that everyone else takes] for our bad behavior. We have choices and we can choose to lie about what we do or to face the consequences just like everybody else. Until we learn to quit using our otherness as an excuse, we have virtually no recourse in the dialogue for equal rights, period. Get a clue. Anything worth having is worth working for. If we want equal rights, then let's start taking equal responsibility.

Dude was drunk in public. Dude claims his seizures were from a head injury. That is possible. However, folks with traumatic brain injuries [even those without an addiction problem] should not drink or use street drugs at all. For a doctor not to know enough to access someone with a brain injury is negligence in my book. For a doctor not to know enough to advise that we should not drink or use street drugs at all is criminal.

Here's the link.

sapphoq healing tbi

Monday, June 04, 2007

A.B.C. Memories Meme

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

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

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

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

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

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

spike: sapphoq healing t.b.i.

Monday, May 21, 2007

Cleaning 5/21/07

Today I removed the garbage from my car.

Just a bag's worth, besides the returnable soda cans and the triple A tourbooks from my recent cross-country extravaganza.

There was an old newspaper clipping and several sheets of photocopy from another survivor of traumatic brain injury regarding the protocol he wanted to have put in place in New York State. While I admired his effort, I figured it has already been done. According to the protocol the docs are always right about what they decide to do. The cost-effectiveness of the un-treatment I had gotten from the emergency room could have had dire consequences for me.

I was alert after the accident, having extricated myself from the car. I knew that "Monday was Halloween so it must be November." I knew the year. I knew that a guy had smashed into my car but not that my car had been runned into a house. I knew that the ambulance took forty minutes to get to my accident. The two ambulances were engaged in the accident down the street. The guy had caused a head-on collision after my accident and everyone down that way had broken bones and were being flown to a nearby trauma center. I knew that my list of meds was in my wallet in my pocket. I knew I had one hell of a headache, which the nurse claimed was from the oxygen. And I was having trouble following directions as x-rays were being taken of everything but my head. I had hit my head repeatedly on the ceiling of my car. Also back-and-forth between airbag and headrest.

I wanted to sue the hospital but the lawyer was strangely uninterested in that.

Screw the protocol.

The aftercare instructions neglected to inform me that I might have a concussion, never mind an official mild traumatic brain injury [abbreviated as m.T.B.I.]. I was more than mildly pissed as I began to realize that life had been altered on some deep cellular level.

Getting back to the junk in my car: There were also bunches of candy wrapper. Mute testimony to part of my problem with not losing weight. Mostly chocolate bars.

Some receipts for vet bills for the oldest kitty, who two months later is still ailing. This is in spite of getting most of the polyps surgically removed from her left ear and several return trips. She is nine. I don't know how much longer she will last. She is not slated to die. But I can feel her slipping away from us. The operation was 400 bucks and then we got told that she also has stuff wrong with her spine. The visit after, the other vet said, "No, this is all from her ear problem and now she has an ear infection." I threw the receipts out. They were sticky from spilled soda.

A green cloth and some steering fluid got to stay up front. I should have put them in the emergency plastic bin in the trunk. Old cars and "be prepared for anything, anywhere, anytime" sort of thinking tend to go together like sandwiches and pickles. I was no boy scout but I have learned to keep extra stuff on hand. None of the extra stuff helped me this weekend. What helped this weekend was close proximity to my house.

Two blankets for the dog covering up the back seat. Bunches of stuffed animals for her-- mostly frogs-- and one bone. One of the frogs plays music. The dog has learned to activate that feature by mouthing or pawing the frog's tummy. Not necessarily something I welcome when driving but the dog likes to do it. A stuffed duck, a basket, a broken windshield scraper. The broom part for pushing snow away is gone but it is still useful. [I use a broom in the trunk for the snow and an old pickax for freeing the car from ice ruts]. An emergency cane and some old white sneakers "just in case." A vibrating back pillow stuffed under the driver's seat in case things begin hurting.

In the console are various pads for scribbling notes and things, a few maps, a pen. More maps in the glove box. Rocks in the ashtray, rocks on the floor. Rocks in the side panel. I like rocks. One of my obsessions. I have rocks all over the house. An extra pair of sun glasses for my rare but real photophobia. Irfan's syndrome I've heard it called, although the special eye doc has never called it that. Photophobia is a pain. That "sunlight dances in my eyes" of my journal references my strong intense painful experience with bright lights and glare these days.

The dog hair stays. The tracked in dirt stays. The fingerprints and muzzle prints stay. I am not cleaning the car out in order to sell it. Just pitching the garbage like so many broken things.

I like rooting through castoffs and unexpected finds in abandoned old partial foundations in the woods. Once I found a top to a blue tin coffee pot, a remnant. I use it to hold incense. It brings me pleasure. This treasure hunting, perusing antique shops and flea markets and thrift stores for "the find" that is going to change my life or at least my finances. Curbside raids during city-wide clean-up days have gifted me with a bureau, some cool old pictures in old frames. Other peoples' memories thrown out for me to find and cherish.

I am a reluctant pruner of my own memories and outgrown clothing. After my accident, I was immediately aware that I no longer understood the world and its' inner workings. I forgot random parts of my life. Those parts are slowing coming back as I continue to heal. Reluctant to lose them again, I write them down over at for electronic prosperity. I had a sweater once that I hated. It was ugly. Pumpkin orange tweed, with green scotties. I packed it when I moved cross-country and then packed it again when I moved back. 3000 miles and I never wore it.

The neuropsych testing which all t.b.i. survivors should have revealed that my memory is even better than those without a brain injury. 99th percentile, the laid-back guy told me. I could remember 9 numbers [almost 10] and repeat them forwards and backwards. In real life that meant I could remember phone numbers. I didn't remember who called on any morning. I knew what I had for breakfast because most days I eat the same thing-- a nutrition bar that is supposed to give me energy. I'm still waiting for that one.

As I began to remember more and more of what I forgot, I began to respect the power of my memory. I am one of the two percent that cannot forget. Two percent of folks with a traumatic brain injury survive with intact short-term memory. My memory, in spite of those things that were inaccessible to me for a time, was in the category of brilliance. Block design too. I finished all of them, though for the last two I got a bit distracted by the p.a. outside the door announcing phone calls and all of that.

Before the accident, I didn't realize how powerful my memory for events and phone numbers was [and is still]. If I had been asked, I would have told you that my memory was a mess. It wasn't. I had too much to do is all. It took an accident for me to realize how intelligent I am. My brain is broken, yes. But not to be discarded. To be cherished. I have names for various medical ailments and body parts. My period is Matilda. My recurrent ulcer responds to Medusa. Medusa for the snake-like vise she grips my gut with. My "piles" [how's that for an old-fashioned word?] are Frick and Frack. My post-injury brain is Briella. Briella, like a beach in New Jersey in the summertime. Twisted a bit. Briella is brilliant sideways.

I have written some of these things before in other places. I will probably write them again. I have to keep writing it. And writing it. And writing it. Get it down. Track my healing with words. In my writing I force my words to sing. When I set out across country, I hoped to find some scattered pieces of my self in places I had never been. I did. Like me in my very first memory of learning how to walk, my haphazard soul retrieval picked up momentum across the miles. I am back now, more myself than I have been in years.

sapphoq healing t.b.i.

Thursday, May 17, 2007


In the state that is dieing to pay for almost everyone's health problems, it was interesting to note that some folks with brain injuries are crying "foul." The dirty little secret of nursing homes everywhere is that in the bid for dwindling funds, they have become repositories for folks with brain injuries [both acquired and traumatic], folks found to be mentally ill, folks unable to go home immediately after hospitalization but not sick enough to take up hospital beds and so forth. Anyone who has had direct experience with a loved one in a coma being shipped off to a nursing home [uh, thanks managed care and health mediphorical discintegrarganizations] is familiar with exactly what kind of "rehabilitation" such places offer. It is about time that folks with brain injuries stuck in nursing homes raise their voices in protest. Apparently, Massachusetts provides some services for some folks with t.b.i. but has ignored those folks with strokes and other acquired brain injuries by shutting them away in nursing homes.

Community living with natural supports is much preferred for any civil [civil= human being who is not a law-breaker, able to live in society without being a threat to that society] over institutionalization. Group homes are far down on the list of preferences, yet congregate living is still better than existence in a nursing home. The ideal is for folks with any disability to be able to choose where they will live and then given the means to utilize the [hopefully natural] supports needed to be successful. No doubt, most folks want to be in their own home surrounded by their loved ones. Some may wish to live in an apartment with or without a roommate or two. [N.B. Keeping one of us in a nursing home is far more expensive than allowing us to have a true say in our lives].

To those of you who talk about "special needs," we do not have "special needs." We have the same needs that you do. We have the same needs for self-determination, love, friendships, communications, mobility, sexual expression, productivity, societal roles, a space to call our own, and community participation that you have. Get a clue people. By calling our needs "special," you divorce yourselves from our humanity. Are you afraid that you will wind up like us? We are not contagious. [Wait. Maybe I am. Two of my friends came down with traumatic brain injury after I did]. I remember a woman boarding a bus in Phoenix. I was attempting to get my fare out to put it in the little fare grabbing machine which was new to me. She appeared to be afraid of my walking stick. Or maybe it was what the walking stick represented. Or maybe that somehow I was going to leap off of the bus and steal her bicycle on the rack outside in front of the bus. I dunno. Fear this. Fear a bunch of us united together in our anger and strength determined not to be locked away in nursing homes.

In this society, those of us who become disabled quickly find out what it is like to be a second-class citizen. Some surrender to despair, some ignore the situation, and the rest of us get angry and politically active through organizations like A.D.A.P.T. My sincere hope is that Massachusetts will choose to spend healthcare dollars on her disabled citizens stuck in nursing homes rather than continue to spend them on those pesky illegal aliens who are snapping up construction jobs [and cluttering up emergency rooms] all over the country.

sapphoq healing t.b.i.

Thursday, May 10, 2007

Please read this.

I am totally pissed off. I have been part of an email support group for three years. It is for folks who have survived traumatic brain injury. Now my posts to the group [not that there are very many lately] have been put on "moderated" status because of the e-mail address I use for the group ending in "" is my ten dollar push button domain that I bought a few months ago in order to stand with a couple of friends who were being bullied on-line. [Consequently, I also became a target, but oh well].

The owner of the group had originally written to me about others in the t.b.i. group who were writing to her because of their concern/paranoia that I am a witch, and/or the e-mail addy itself. I didn't save that short letter because I never expected it to escalate into this foolishness.
Excerpts of our correspondence follow:

Hi ________ ,

...It was another part of your e-mail that concerned mentioned something about "how many people have written [to you] regarding the witch thing."

Are you meaning the domain name where I get my e-mails now? [which was set up to help people who have been targeted by on-line bullies]. Or my personal beliefs? [which I am not asking for anyone's approval of]
Or something else?
I am not understanding why either should be a matter of concern.

I have been willing to set aside my differences in order to remain on the t.b.i. list by practicing
celebration of diversity to include those who are christian of varying political persuasions or
who are heterosexual or who have different views of medications and natural healing etc.

Please clarify this thing about witches so that way I may contribute to an orderly t.b.i. survivor list.
I have no need to hijack threats or to convert people [forbidden in my religion, actually]
and at the same time when an adult asks me on the list what is the "iq" part of "glbtiq"
I would like the freedom to answer the same without going into any sort of gross detail.

And I certainly am not willing to hide my spirituality just as I am not willing for anyone else to hide theirs.

At the same time, I understand what an undertaking running a list is-- especially of folks who do not necessarily have to be similar
to each other except for the circumstance that we happen to share the experience of living with a brain injury.

spike q.


Hi Spike,

...After a B.I. so many are "paranoid" when something doesn't "look" or "sound" right
and they get antsy and unsubscribe...go through the subscribing thing all over again....

...Now the "witches" thing is what I've had a few people refer to and they are
wondering why anyone who would be a "witch" would be on this list, and it makes
them paranoid. So, I was hoping that you'd keep one of your old email addresses
that doesn't have anything about "witches" in any part of it....we're trying to keep
some sort of "family" and "normalcy" on the list...

...For those like me who aren't aware of why you got this email addy, the
"resistant-witches" sounds more like a "cult" than anything else and I really
don't want to give anyone on the list any reason to "doubt" or "wonder" about the
T.B.I. group. It just "looks" like something they should worry about, you know?

...You may give some thought as to "why" people are bugging you...



Thanks for explaining stuff to this brain, _______...

...There are a few folks on the list from time to time with alternative spirituality practices
and it is for those folks that I will not go back into the closet of assumption.
I am what I am. And yes, I am a witch, and not even of the wiccan variety.
Part of dealing with a traumatic brain injury involves learning or re-learning how to live
in the world among folks who do not believe or think the way we do now.

...There are non-christians who come down with this t.b.i. thing
and maybe "ask spike" might also serve [in some cases, for the less jittery]
just as well as explaining that resistant-witches is an e-mail provider
or even that not everyone on the list is a christian-- depending upon who
you are responding to...

...[I will continue to]...leave my personal spiritual practices
off-list unless there is a compelling reason to do otherwise
[and there never has been to date]....

...Peace to ya,
spike q.


Hi Spike!
I did some thinking about how to answer you...and then
decided to do a search for "resistant witches" because you
"said" it was an I.S.P. server....[dots hers] it was not. What I found was your web site and found the "definition" of what you
practice...I also noticed that there was nothing about
"email bullies" , but only about witches and that you were tired of being quiet
(so to speak).

I also noticed that this web page was very "negative" and showed lots of
"anger." This is NOT what we are trying to pass on to the T.B.I. list either...
your...Yahoo profile page which is also very "expressive."...gays and all sorts of other religions
and polotics are being forced upon me, offensive clothing and such...
...but when a sex offender molests a child and is allowed to live close to
my neighborhood I don't like it...collecting welfare...I still have to fight for
my own rights. Fairness has nothing to do with it. As long as I live in
this country, I must abide by their rules...

...If you'll read the rules of the list once more, you'll see that "politics,
religion and sex" are NOT allowed...By letting you publically use this email name on this list you
are pushing your religious beliefs onto the list, whether you are talking about
it in an email or not. This is NOT allowed...

If my email address ended in, I would be in violation of the
same rules. You don't have to "talk" about your beliefs because you've already
made a "statement" that you are a witch and that statement is shown in your
email address...

...I think if you thought
about the possibilities, you would understand why this can be trouble for a list
like this one and if you cared about being on the list or those on it, you would
say "ok, no problem."..."Why" give them a chance to bring up this subject on the list?

...Your posts will be moderated
at this time until you get your email address changed...following the rules....



apparently i expressed myself wrongly.
resistant-witches is a domain which has e-mail addys attached to it.

i am to be judged because of an email addy.
i will not justify my beliefs or practices to you or to anyone.
nor will i justify the homepage that you found that is indeed
in response to internet bullies--
not "email bullies."
i have other avenues of support.
i am not defenseless.

furthermore, you know nothing of the situation at hand that
i have been dealing with.

choosing to exclude people whose email addys happen to end
or even in is your perogative.

i am also tired of assumptions.
spike q.

I unsubbed from the group. Fuck it.

Sunday, May 06, 2007


On my trip to various cities out west, I was directly confronted with my increased impulsivity courtesy of my traumatic brain injury. My first day in Chicago, I cursed out a store employee at the airport [under my breath] because he claimed not to have change "even if" I "bought something" which I was willing to do. I needed a single for the subway so I could get to the train station. I removed myself and reminded myself that he was doing his job and that was that. Mentally, I congratulated myself for exercising some restraint. I did get my change but not from him. I cursed out someone else somewheres else-- again under my breath-- but I remember neither the time nor the circumstance.

In Phoenix I had to admit that my impulsivity could lead to dangerous consequences. When I took one bus that turned before I needed it to and didn't allow the driver to complete an explanation [which she gave to another passenger a few stops later] that another bus was coming which would take me to my destination, I was left on a corner wondering if I should "walk" the remaining distance. Fortunately, I remembered something about calling and asking someone with sense about these things. So I called my friend with my [borrowed] cellphone and I learned that I should not walk through Papago Park on a hot day. So I waited for the bus. The first few days in the Sonoran Desert which was Phoenix Arizona, I noted that people carried water or Gatorade with them. It took me several days [and a very long walk to and from the zoo-- from and to a bus stop-- with no taxis in sight] for me to connect with the idea that I need to drink more fluids AND to also carry water or Gatorade with me.

In trying to keep up with the demands involved in re-learning how to utilize public transit, I put myself at risk for dehydration. I was "lucky" not to endure medical consequences for my poor decision-making combined with my impulsivity. By time I got to Sedona, I was carrying water with me almost everywhere I went. Sedona's weather was a tad cooler but hydration still a necessity. I also elected to take jeep tours rather than walk great distances to unfamiliar hiking trails.

This impulsivity is polar opposite to my pre-injury personality which involved cursing people out [not always under my breath] but did not involve risk-taking, especially with health concerns. I survived the Sonoran and learned a few things about my vulnerabilities and liabilities in the process. When the airplane taking me home was landing, I felt triumphant for managing to [mostly] take care of myself and [mostly] making good enough decisions over the past three weeks alone.

sapphoq healing t.b.i.

Sunday, April 22, 2007


Many of us with traumatic brain injuries wind up with an exacerbation of mental symptoms or with new ones, depending. For most of us, the deal is clinical depression-- Major Depression. For a few, it's schizophrenia. Furthermore, those of us who weren't addicted [to alcohol and/or to other drugs] before the t.b.i. run an increased risk of addiction afterwards. And those of us who have maintained some sort of recovery run an increased risk of relapse.

No, I don't own a gun and don't have access to any guns.
No, I don't think that gun ownership is a worthwhile goal for those of us with traumatic brain injuries to go after.

If there ever becomes a list of names of people who are forbidden to own guns, I will voluntarily ask that my name be put on it.

sapphoq healing tbi


Many of us with traumatic brain injuries wind up with an exacerbation of mental symptoms or with new ones, depending. For most of us, the deal is clinical depression-- Major Depression. For a few, it's schizophrenia. Furthermore, those of us who weren't addicted [to alcohol and/or to other drugs] before the t.b.i. run an increased risk of addiction afterwards. And those of us who have maintained some sort of recovery run an increased risk of relapse.

No, I don't own a gun and don't have access to any guns.
No, I don't think that gun ownership is a worthwhile goal for those of us with traumatic brain injuries to go after.

If there ever becomes a list of names of people who are forbidden to own guns, I will voluntarily ask that my name be put on it.

Saturday, April 14, 2007

ENDO 4/14/07

Two endocrinologists from Italy have noted a correlation between traumatic brain injury and the onset of hypopituitarism based on their literature review. Because of costs, they recommend referral to an endocrinologist on a case-by-case basis.

Post-concussion Syndrome was mentioned and the similarity between symptoms noted. Correlation does not prove causality however. The superficial sharing of symptoms on a list proves nothing.

I was not pleased by the authors' suggestion that folks in vegetative comas be thrown out and folks with mTBI be thrown out.

Why not throw everyone out except for those unfortunates with P.C.S. whose complaints are very often viewed with skepticism by the medical community on the whole and many practitioners of medicine individually?

Or why not do the research to further identify patients with traumatic brain injury who should be referred to an endocrinologist who is familiar with t.b.i.?

sapphoq healing t.b.i.

Monday, April 09, 2007


Researchers in Israel have figured out what some of us mT.B.I.-ers have suspected: We have sleep disorders. [Some of us, anyways]. Duh.

This article should be photocopied and presented to every professional who doesn't follow-up on our complaints of sleepiness, fatigue, cognitive difficulties, or headaches.

I myself have delayed sleep-phase syndrome as part of my sleep apnea which is treated by c-pap machine.

sapphoq healing t.b.i.

N.B. the study was small-- 42 patients.

Monday, April 02, 2007

BRAIN FOG 4/2/07

While surfing around Medscape, I found a reference to this website about Post-Polio Sequelae:
The open letter to physicians is worth reading.

Along the left-hand side are tabs, one of which will take you to the library.
The library hosts links to a variety of articles, some of which deal with similarities found between the fatigue that a Post-Polio Sequelae patient experiences and the fatigue associated with Chronic Fatigue Syndrome. Also mentioned in the articles is the brain fog which I have become very well-acquainted with in my own struggle with fibro courtesy of traumatic brain injury.

Although the articles are not specifically written about T.B.I., they are worth reading. Folks who have sleeping problems or fibro not associated with t.b.i. will also find a visit to the site worthwhile.

sapphoq healing tbi

Friday, March 30, 2007


There's yet another criminal in the news-- this time in England-- using the brain injury defense for what he done. At least this time, William McHenry is admitting to stealing pocketbooks from library patrons AND getting help for a drinking problem. McHenry has been sober since February [hats off to him for that!] and lists his alcohol addiction as the motivation for stealing. It costs money to drink and that is that.

The development [or sometimes exacerbation] of addiction is common sequelae to a traumatic brain injury. McHenry got his from his house ceiling falling upon his head back in 2005. I wish him the best of luck as he is taking responsibility for what he done and is getting treatment for his alcoholic addiction.

People with traumatic brain injuries should not drink or use illicit drugs at all. Seems that the injury itself lends to addictive behaviors. I think as research is done in addictions treatment, it may very well dawn on someone that here is a population of underserved potential customers. Yes, folks with t.b.i. need education in things like addiction and doctors need education in things like t.b.i. and pain management.

Unfortunately, the classic classroom approach to addictions treatment is doomed for failure with t.b.i.-ers. So those who wish to run such programs will have to quit the cookie cutter approach if they want some stats showing that treatment can work.

Addictions treatment right now is rather hideous on the whole. The often touted un-success rate is an indictment against such treatment rather than an indication of any 'truth' to the current party line excuse "relapse is part of recovery." The idea that especially vulnerable populations-- such as t.b.i.-ers and those folks who have been labeled as mentally ill plus addicts-- are getting especially disaster-prone results out of addictions treatment should be serving as a wake-up call. Real people are dieing. We are not a bunch of statistics. With the money poured into the addictions treatment industry, it's about time that the industry be held accountable for some real results.

At any rate, I certainly wish William McHenry the very best in his endeavors to turn his life around.

sapphoq healing tbi

Monday, March 26, 2007

PLANNING 3/26/07

I am going away cross-country. When planning an itinerary, I discovered that thinking ahead in a linear fashion [the way I used to] was no longer second nature. [Drat the damage to my executive functions.] Instead, my t.b.i.-related random chaotic style of doing things has infiltrated far beyond the boundaries of household organization. Yeah, that is what travel agents are for.

Unfortunately, the travel agent was doing a good job of imitating a nervous wreck during my three hour session with her. She was in a mad rush to get me out of there. At the end, she threw the itinerary on the desk and said, "This is it. If you sign this, there can be no changes." It appears that I have already posted about this singularly difficult encounter with the forces of order. Onward ho.

Upon getting everything home, I was informed that no, I did not have to be back for a commitment at the end of April. That commitment is at the end of May. I also realized that one of the connections that the harried travel agent had provided me with was of the "no way Hosea" variety-- as in, no way could I move fast enough for that. I took the weekend off to recuperate and to think about my options.

This morning I got on the phone to fix and amend and alter what I had to.
The upshot after spending a morning's worth of aggravation and phone calls is that I will be leaving a day earlier than I thought and coming back four days later. And renting a car for a day in order to make it to one spot which wasn't doable without spending most of a night in a train station waiting for a transfer.

Now I have several choices. I can continue to grieve the change in my thinking processes-- a total waste of time. I've done enough of that. Something in my inner core was permanently altered by my whacked out neurological landscape. I've known this since I got out of the car after the accident. I can accept it without having to wear the shackle of must stamp the seal of approval on it today. I can bitch and moan. That option is also rather unattractive. A constant diet of cognitive stew is boring. There are a few other options I'm sure that I am missing here. What I am putting my self-determination to is the idea of being happy that I am able to go on an extensive vacation. Because not everyone can.

sapphoq healing t.b.i.

Friday, March 23, 2007


I like mornings alright. It's something inside of me really. Something that resents change. Those between times where I shake myself from infested sleep, where the boundaries are blurred. Tapping into power. It is not something inside of me. It is I who doesn't care for the murky undefined borderlands of between.

The dog is instantly awake. She is my startling opposite. Frizzly energy to my melancholy. She explodes with happiness. My dog celebrates mornings for both of us. We are a community intertwined in Destiny herself, my dog and I. Without her, my fear would have rendered me sterile. Taken me down and drowned me in the onslaught of my atypical neurology.

It is my fear that chokes me. I will not be remembered. I will not have made enough of a difference. That is my fear. My dog knows this. She pushes me on and out into the sunlight. Blinking with pain and photophobia, I shield my eyes, always glad to return to the safety of home and dim lighting.

Home is where I hang my hat, hang the dog leash, stash my protein breakfast bars of power and frozen colored ices. Those bars of power are the breakfasts of champions.

Mrs. Eugenia Simpson gyrates onto the stage, clickety-clack, screaming for notice. It is a curse, this 99th percentile memory which survived through my broken brain. It is a curse, this second sight, third eye, and fourth dimension. "Eugenia," I address her, "I don't care what you think about my breakfast. I didn't know you thought about me after all of these years. You are dead you know. D-E-A-D dead." She throws my eighth grade health book at me. It opens to the how to eat correctly and what to eat when triangle. I laugh. She keeps dancing.

Some wise fool once defined nirvana as a day without dead people and traumatic brain injury. The ghosts keep floating through me as more memories filter in, like sunlight stinging my eyes. Rebuilding neurons and synapses yield dead ends of central nervous system tremor. Permanent. Another mark of progress. I have been marked beyond skin and sinew.

Community is the who around me, the us, dead people and all. I have neglected so much in my artificial quest for wholeness. I have forgotten the Other. The Other whose land we have stolen. I am also the Other. The interior landscapes of my brain has also been stolen, twisted beyond recognition, and left in a dumpster.

I am a second generation American. Briella is my second generation brain. Brilliant but sideways. Doing the two-step to Eugenia's celebratory dance. My dog nudges me. She dances and sings to me, "It's okay to let go of the gilded lily. It is not yours to pay. Come play with me in the wilderness." Somehow I think that didn't translate so well. I sigh and pick up the dog leash. We step out into the wilderness together.

sapphoq healing t.b.i.

Sunday, March 18, 2007


W-A.B.C. News Anchor Bob Woodruff and his wife Lee will be making the opening address at the Brain Injury Association of New York State 25th Annual Conference in Albany New York. They will be taking the stage after Michael Kaplan and Judy #1 have their say at 10:45 a.m. on Thursday June 7th. The two day conference as usual will be hosted at the Marriott on Wolf Road.

Those of you living in a news vacuum may not know that Bob Woodruff got a t.b.i. from an exploding bomb over in Iraq in January 2006. He and his wife Lee wrote a book about the ordeal. The book is called, "In an Instant."

The scoop among the t.b.i.-ers on e-groups was a bit of grumbling and remarking that his results are proof of what money can buy in terms of cognitive rehabilitation and dedicated professionals. So it was shortly after a docu aired on teevee. Certainly, money and terrific insurance policies and some fame does go farther in the world in terms of posh rehabs and all of that. What I don't want our community to forget is that there is that word motivation too. The human spirit surely rises above the envy of those of us who have been cast into the role of the have-nots by our subsequent t.b.i.-related disabilities. At least I want to believe that.

As for the Conference itself: The food at the Marriott is good, workshops good, pool outstanding. I've been to two of them-- I skipped last year's due to a scheduling conflict with a writing workshop that I co-facilitate with one of my editors-- and that is what I remember of them. Oh sure, the not so wonderful VESID folks from New York State put in their annual appearance. Aside from their noxious presence, it is a nice thing to meet up with other t.b.i.-ers who continue to strive for healing.

sapphoq healing t.b.i.