You Say

You say you want to help me.  You're going to help me.  Your platitudes are designed to stifle me, to shut me up, to mollify me.  I am not fooled.  I have brain damage.  I am not brain dead.  Not yet.  Not today.

You say you get it.  You get me.  You've gotten other people like me.  Your attitudes are designed to impress me, to shut me up, to resurrect me.  I am not fooled.  I have brain damage.  I am not brain dead.  Not yet.  Not today.

You say here, let's do this.  This will work.  It's worked for others.  Your crapitudes are designed to motivate me, to shut me up, to robotize me.  I am not fooled.  I have brain damage.  I am not brain dead.  Not yet.  Not today.

I say if you aren't going to help me, then get out of my way.  You haven't helped me.  Your words are empty, meaningless, dull things.  I was never fooled.  I have brain damage.  I am not brain dead.  Not yet.  Not today.

sapphoq healing t.b.i. and leaving a lot of stupidity behind    

Book Review

Brainlash:  Maximize Your Recovery From Mild Brain Injury, Gail L. Denton.  New York: Demos Medical Publishing, LLC, 2008.  Third Edition.  e-book, 343 pps.

Brainlash is a book that is divided into 42 short, easy-to-read chapters interspersed with a journal kept by the author regarding her own brain injuries.  Although Dr. Gail L. Denton is a professional therapist, I encountered choppy and repetitive sentence structure in her book.  I was not expecting this from a licensed professional.  The book could have benefited from better proof-reading.  There were no grammar mistakes.  There was a certain lack of variety within the sentences which in my opinion ought to have been corrected.  Some crucial information was also missing.

Denton refers to m.T.B.I. [mild Traumatic Brain Injury] as an epidemic without accounting for changes in definition which renders an increase in diagnoses.  This "T.B.I. is an epidemic" refrain is one that is often heard in order to boost attention to the problem and hopefully garner more funding for an organization.  I could not help but note the similarity to the claim that "Autism is an epidemic."  The bottom line is that there are a bunch of diseases and conditions which need more scientific research so that best practices can be refined.  

It is "easier" for the State of Vermont to award the contract for all treatment of traumatic brain injury to an agency of visiting nurses than to figure that some brain-damaged people will wind up not getting services as a result of their lack of insight into the nature of t.b.i.  It is "easier" for the frustrated medical professional to latch onto the diagnosis of Post-Concussive Syndrome and treat those symptoms rather than to deal with the whole person and the nature of life-altering events such as brain injury.  It is "easier" for the New York State Health Department to contract the services of a man with a diploma mill PhD to treat t.b.i.-ers than it is to find out which providers actually have a real PhD and decide which one or ones might be best equipped to give effective neuro-cognitive treatment to survivors.  It is "easier" for folks to say to their friends suffering from brain damage, "Oh I get that too" or worse, "You were always like that."  It is easier to push people into the round holes rather than to pay attention to folks who don't fit into neat little protocols.  This whole "Oh noes, _______________ [condition of the moment] is a national epidemic!" thing ought to be put to rest.  All of us, regardless of disease, condition, or health status deserve scientifically-validated treatment protocols.  What doesn't work doesn't work.  Anecdotal testimonials are inferior to peer-reviewed literature.

I can tell you that some of the chiropractic treatments I received "worked for me" to relieve pain on a temporary basis.  I can tell you what they were.  A hundred or a thousand or a million people can tell you similar stories.  But the stories are only stories.  Alternative medicine is popular.  It's the latest buzzword.  People need hope.  Chiropractors, tarot readers, politicians and others sell hope.  But how well does the hope actually work?  I can tell you that I've improved but does my claim hold up under scrutiny?  Do I have test results and proper medical reports to back up what I am claiming?  Goals have to be measurable and results have to be measurable too.  Gail Denton didn't find satisfaction with traditional treatment for her traumatic brain injuries.  So she went elsewhere.   

To be sure, the western medical establishment and the individuals in it are not perfect.  And with concerns about costs, those of us who don't fit into a traditional mode are often discarded left to be in charge of our own rehabilitation efforts.  Insurance companies are designed to cover as little as possible.  No fault automobile insurance [for the states that have this] means "We ain't paying cuz it ain't our fault."  I've fought for medical treatment.  I had to get a lawyer.  Writing in a journal [something which Denton recommends and which I think of as an okay thing for those who want to do so] can be dangerous when it comes to legalities.  Consult with your attorney before deciding to keep a journal if you are a plantiff or a defendant in a lawsuit stemming from your accident.  Don't have a lawyer for your workers' comp case?  Get one.  Your employer has at least one lawyer.  That is almost a guarantee.

One of the things that is crucial in my view for brain injury survivors is neuro-psych testing.  The testing [in my case done by a neuro-psychologist at a rehabilitation facility] is necessary.  Neuro-psych testing pinpointed the areas of my greatest cognitive difficulties as well as my strengths.  I needed to know these things so I could develop work-arounds.  Work-arounds are strategies that I use based upon my strengths that help me in daily life.  With brain injury, battering on our areas of cognitive weaknesses in the name of remediation [in my non-professional opinion] doesn't work.  One of the symptoms of my brain injury is repeating the same mistake.  Attempts to train my way out of repetitive mistakes failed.  I had to find a way around making the same mistakes over and over.  I learned that any ability that I used to have at multi-tasking was pretty much dead.  To this day, it remains dead.  Forcing myself to multi-task in small steps did not work.  What worked for me was finding ways to avoid multi-tasking.  I had to do things in different ways.  Neuro-psych testing provides a roadmap of "where to go from here."  It is vital.  Get some.

The other thing that Denton neglects is testing for complicating conditions caused by the brain injury itself.  I remember these statistics:  
          80% of us have vision problems as a result of our brain injuries.  These vision problems are not limited to field deficits [something Denton does mention].  Vision problems may be expressed as double vision in one or both eyes, perception problems, the appearance of "ghost-lines" around the things we see, ocular motor dysfunction [the eyeballs not moving well], photo-sensitivity in varying degrees up to and including true photo-phobia, dry eyes because we don't blink as much as we used to.  This list is by no means exhaustive.  One of the things not on the list is visual acuity.  Visual acuity is the thing measured by the Snellen Eye Chart.
          20% of us have hearing loss as a direct result of our brain injuries.
          50% of us have sleep apnea or other sleep disorders as a result of our brain injuries and/or obesity occurring after a brain injury. 
         Up to 90% of us with left frontal temporal lobe damage develop [or have worsening problems, if there was a pre-morbid mental health diagnosis] Major Depression.  

What do these numbers mean for those of us with acquired brain damage?  Hearing should be tested.  How our eyes function [not just visual acuity] should be tested.  We should be screened for the existence of a sleeping disorder and some of us will be then referred to a lab for a sleep study.  Our mental health should be evaluated by a clinician who is familiar with traumatic brain injury.

The last piece of vital information missing from the pages of Brainlash is the idea that the categories "mild," "moderate," and "severe," denote things like how long a loss of consciousness was in the event that caused the brain to go bangity bang bang but those categories are not correlated with disability outcome.  In other words, a person who is given the diagnosis of mTBI [mild Traumatic Brain Injury] can wind up with more permanent disability that someone who is given the diagnosis of moderate Traumatic Brain Injury.  A person with severe Traumatic Brain Injury may be able to have gainful employment after treatment and someone else adjudged as mild or moderate may not.  Finally, "mild" does not mean that the brain injury is not serious.  All brain damage is potentially life-altering.

Brain injury survivors in the States ought to get in touch with their state Brain Injury Association.  These associations vary in effectiveness and aid offered to the survivor.  Some have support groups.  Some have scholarships for survivors in economic hardship to attend their state Brain Injury Conference.  Some hold informal discussions.  Some are involved in other talks and one day conferences which survivors may be able to attend for free or at a reduced rate.  Some have lists of medical providers who are familiar with t.b.i. and some refuse to provide any information about that.  If you don't contact your state B.I.A., you won't know if there is help available to you.  If you have contacted your state B.I.A. and found them lacking, you can look up your regional office of Independent Living Associations.  Folks who work for an I.L.A. often have disabling conditions themselves.  Many I.L.A.s provide informal peer counseling, disability advocacy, and benefits advocacy.  And yes, they do have lists of other agencies that may be able to help. 

sapphoq reviews says:  The book Brainlash has a lot of promise but does not deliver.  Although the chapters are short, the information provided is of the "nothing new here" variety.  Survivors who need support would do well to look for it via neuro-psych testing, a state Brain Injury Association, an Independent Living Association, and/or on-line via brain injury chatrooms and e-mail support groups.  Skip this book. 

this entry was cross-posted to sapphoq reviews.

Standards and Excuses

There was a time when I [briefly] had the services of an "art therapist."  I've written about her once before some years back.  But the story bears telling again since the passage of time may bring a clarity to the mulling over of past events and situations.  The woman was indeed a situation.

The last time I blogged about her, it was to register a public complaint about two things.  Her PhD was fake.  For 35 bucks and a copy of her "book," she was sent a degree from a certain mail-order university which gave "credit for life experiences."  Said university operated solely out of a slummy office in Hawaii or somewhere like that and I've heard that it has since been forced to move to Asia.  

She is not the only person in the universe who has hung out a shingle on the basis of a bogus degree.  There is a man in the same city who the state contracts to offer services to folks with traumatic brain injuries.  He also has a bogus degree.  Although the State was made aware of his situation, they chose to renew his contract offer that year and the one after.  He is still under contract with them as a "PhD" which he did not earn.

Last I knew, the art therapist was claiming to use her [real] bachelor's degree for her work.  The problem is that she still also uses the title of "Doctor."  I am equally sure that any insurance companies are reimbursing her under doctor rates.  She is not under contract with the State as far as I know.  She does offer expensive workshops for professionals to attend, in addition to taking on clientele.

The other complaint that I had blogged about was how I came to be discharged from her services.  She fired me over the telephone.  The reason why I was terminated is because I refused to go to her personal internist for medications.  I had my own professionals in place for that, including the shrink who understands t.b.i. and who is probably more qualified to prescribe psych meds for me than her internist is.  The conflict of interest should be obvious to anyone who knows anything about ethics.  It is not ethical for her to insist that I see one of her medical professionals instead of one of my choosing.

That particular blog post yielded a comment from a woman who claimed that "everyone loves" the art therapist-- as if that makes a difference-- and that the art therapist has helped a lot of folks.  I have no direct information on how many folks the art therapist has helped.  Nor do I have any way of measuring what "being helped" might evidence as.  My original complaints remained that her advanced degree was bogus and that she dumped me over the phone under less than ideal circumstances.  The fact remains that in the couple of sessions that we had, I learned a few things.  So I will not say that the woman is useless, because that is unquantifiable and not fair.

The idea that I am addressing in this post is the supposition that because we are brain damaged, we are granted a license to get crap work published or perform any employment for hire in a substandard manner.  The world does not have to adjust to me and my atypical neurology.  I maintain that I am the one who has to adjust to reality as it is and not the way that it "ought to be."  If I want the same rights as everyone else has, it follows that I have to hold myself to the same standards of performance that everyone else is held to.  I live in a state of constant irritation and frustration.  I don't get to impose my emotional state on those around me.  And I don't get to have special privileges on the basis of my whacked up brain.  The "art therapist" wrote terrible prose.  I read her "book" and I did not think all that much of it.  Being loved is the stance of an emotional infant.  Self-publishing terrible prose and having a diploma mill degree are not signs of achievement or self-respect.

I recently read a book by another "survivor" of a traumatic brain injury who works as a counselor.  It also demonstrated substandard writing.  I don't mean that I didn't care for the book.  I mean that the book was poorly written.  To be sure, her book was better written than the "book" written by the art therapist.  But it still was not a professional job.  The book by the survivor-counselor employed choppy sentences throughout it.  It also left out some key information that t.b.i.-ers and family members deserve to have in such a book as the one she wrote.

After my accident, I was no longer able to express myself in a clear fashion on paper or in e-mails.  I had to re-learn how to write sentences.  Since there wasn't any cognitive rehab in the works for me [due to insurance companies fighting over who would pay my medical bills-- the one three-day a week program that I qualified for refused my offer to pay cash up front without any sort of discount], I had to be in charge of my own rehab.  I learned how to write grammatical sentences again in a t.b.i. chat room and in a t.b.i. e-mail support group.

The world does not owe me a living.  I don't get to have slovenly standards for myself on the basis of my brain damage.  To be sure, my injury means that I have to work hard at daily everyday stuff that many people take for granted.  Nothing is automatic for me anymore.  The brain fatigue kicks my ass on a regular basis. 

The voc-rehab folks want to send someone to my house for an hour or two in order to watch me do housework and offer a few tips on body mechanics.  After this, the voc-rehab folks want to discharge me as a rehabilitated homemaker.    In other words, V.R. has not been able to help me obtain any employment, never mind meaningful employment.  I understand that I am getting dumped.  Oh well.   

Anyone who has visited me in my home is aware that a few tips on body mechanics will not in any way render me an adequate homemaker.  I continue to struggle greatly with initiation, organization, and stamina on a daily basis.  I keep pushing myself to find a different way of doing things even as I prepare to hire someone who will help me for several mornings a week with home maintenance.  Knowing that I need help is not an admission of defeat.  It is a sign of strength to be able to ask for assistance.  I am comfortable with that.

 My experience with the professional helpers and bean counters at the V.R. office has left me grateful to the few people in my life who have never stopped believing that I will again find my way to viable employment in spite of the obstacles that I face.  And I do know what I want.  My old dream of writing books has never left me.  It is something inside of me that demands that I write.  I have to write.  I continue to practice my writing in blogs and journals and forums. 

I've been published in many literary magazines [lit mags].  I have way more than fifty publication credits to my name.  And my stuff has appeared in three anthologies.  I've read at open mics.  And I keep on writing.  It is my hope to get good enough to land a book contract.  I anticipate having a self-published e-book ready for market soon.  If I live long enough, I hope to get good enough to get paid for my writing up front.  I figure that I am brain-damaged but I am not dead.  I want my stuff to stand on its' own merit.  I don't want to be known for my dysfunctional brain.  I want to be known for excellence with the written word.  And that means I have to commit to working toward the same excellence than any person honing a craft would work toward.  Those standards should not be lowered for me because of my brain.

Getting a bogus PhD from a mail-order university and getting a book published as a survivor with little regard for literary excellence both cheapen something of extreme value.  That something is to be known beyond labels.  If I am to be a citizen of the universe with something of value to offer, I don't want that something to have less professional quality than the works of people who are not impaired.  If my stuff isn't good enough to stand on its' own merits, I don't want it to be allowed to stand on the basis of "that person has brain damage so substandard output is excusable."  I'm here declaring that substandard output is not excusable.  Moving beyond my neurology requires excellence, not excuses.

sapphoq healing t.b.i.      

  

Using a Foghorn on my Brain

When an event happens to the brain which is out of the ordinary, the effects are never in isolation.  The brain is essential to lots of things which perpetuate life-- stuff like throwing up, waking up, and growing up.  Without a functional brain stem, a newborn will not live more than a few hours.  The brain is the thing that informs us when we are in pain, when we are hungry, when we are tired, who we are, and even to some extent how we move.

Since my motor vehicle accident which began my journey with traumatic brain injury, I have acquired much anecdotal evidence [not based on research, ergo not admissible in court] that there may be some casual relationship between fibromyalgia and car accidents.  Unfortunately, some number of folks with fibro may be drug-seeking or perceived of as drug-seeking.  And some percentage of medical professionals tend to view fibro as something that is made-up because they don't quite know how to treat it yet.  One thing is for sure-- at least with my fibro which I do not treat with any drugs whatsoever-- movement helps.  The more I move, the better I feel.  

I didn't know that I had fibro.  I was first diagnosed with it a couple of years after my accident.  The pain doc called it "trigger points."  I certainly had them.  I refused all drugs for it so he sent me to pool therapy.  Pool therapy was the best thing that could have happened to me.  The pain melted in the warm salt water.  While in the pool, I did my assigned physical therapy exercises, walked on an underwater treadmill, and got to work on fear of falling due to the objective vertigo.  Many of the folks in the pool with me also had fibro.  I didn't know that I had it.  The anesthesiologist said they were "trigger points."  I couldn't relate to the fibro sufferers who complained about the pain and the fatigue and the ineffectiveness of the drugs they were grudgingly being prescribed.  It wasn't until I was discharged from pool therapy that I found something out.

The guy who was discharging me wrote down that I had fibro on my form.  "I don't have fibro," I asserted.  We argued.  "Trigger points are a symptom of fibro," he told me.  Crap.  I didn't really believe him.  I went back to the pain doc with the new [to me] information.  "Fibro is a lifestyle," the pain doc told me.  "You aren't drug-seeking."  Even now, I tend to use the word "trigger points" and "fibro" interchangeably.  

I am fatigued.  I no longer have the sleep apnea.  [I read in a few places that 50% of t.b.i.-ers have sleep apnea.  So that is something that we should be screened for].  I used the c-pap for around 18 months and lost some weight and I have been medically cleared as no longer having it.  The c-pap machine took away the feeling that I was sleep-walking through life.  Yet, there are times when I do have brain fog or fibro-fog.  

This brain fog is an altered state in which it takes more of an effort for me to think clearly-- more than usual.  I do not trust myself to go places where I might have to be vigilant or more alert than usual.  Because of the somewhat unpredictability of the brain fog, I refuse to work with machinery that can cause serious injury if I lose concentration.  Brain fog sucks but not knowing about it would suck more.

There are things that I do daily, cognitive things, which help me keep my brain Briella on her toes.  She is not such a well-oiled machine anymore.  The brain injury has robbed me of my ability to multi-task and replaced it with something that the shrink refers to as high distractibility.  In my quest for continuous cognitive improvement, I force myself to make new connections in my head about the stuff I think about and experience.

Observing the birds in my yard and studying their details helps.  I can identify some birds by their song, some by their flight pattern, some by their behavior.  Puzzles help.  I play a lot of puzzle type games on the computer.  I also do search-a-words, missing objects, number puzzles, and logic puzzles.  Learning a language helps.  I review my Spanish constantly and I have also picked up random bits of Portuguese and Tagalog.  Reading helps [especially now that I have an e-reader without with reading used to put me to sleep after a half-hour].  I read all kinds of books now.  At first I wasn't able to read the fantasy books I used to enjoy but now I can.  My reading tastes did change.  I read more factual and technical stuff now than I ever did in my life.  Music helps.  Classical in particular to my way of thinking due to its' complexity.  Immediately after the accident, I began insisting that the classical music be left on all night.  With tears if the mate tried to turn it off.  Any music helps though.  It's the rhythm and the dancing and the patterns and the observations that have kept Briella away from crashing into the rocks of total brain melt throughout the last almost decade post-accident.

One thing I do know and I wish to be clear about this:  I don't know how the severity of my fibro compares with the severity of anyone else's fibro.  Some folks very well may find themselves too fatigued to move out of bed without some kind of pain relief in a pill form.  If you have fibro, please do not construe my words to mean that I am lording it over you because I can function without fibro drugs.  Mine may be milder than yours.  Or perhaps I am able to block out pain better than most people can.  At any rate, for now I just keep moving.  And that is working for me today.

There is a balance between keeping my brain sufficiently challenged and getting the rest that I need.  My need for sleep has increased since the accident.  If I do not nap in the afternoon, I am falling asleep over dinner.  Yeah, I sleep more than eight hours a day.  More than ten if I want to feel like a human being instead of like a tired and battered human being.  But remaining stationary can hurt me too.  So I get dressed.  I take the happy dog for walks, whether I want to go or not.  I force my brain to think.  And in spite of the crap that I face due to my brain damage on a daily basis, I continue to live.

sapphoq healing t.b.i.