Being in Charge of My Own Rehab

     Early on in the days after my accident, I found the tbi chatroom.  It was a sanctuary for me where I could communicate with other survivors.  I learned stuff about how to cope with my brain damage and how to get on with life.  One of the best things I learned there was that I have to be in charge of my own rehab.

     I got no official cognitive treatment for my brain injury.  I was in the chatroom one night bemoaning my fate when someone spoke up and told me this: You have to be in charge of your own rehab.

               You have to be in charge of your own rehab.

     This simple truism frightened me.  With trepidation, I slowly experimented with being in charge of my own rehab.  What did that mean for me?

     Being in charge of my own rehab meant that I had to find the people who were willing to steer me towards things I could do on my own to exercise my brain.  Someone in the chatroom recommended playing brain games on the computer designed for kids.  I did.  Someone else talked about an e-group on Yahoo for survivors.  I did that too-- until I got kicked out for refusing to change my email-- and that was how I re-learned how to write sentences that made sense to others.  A third suggested a specific puzzle game.  I went out and bought that. 

     I learned how to carry a notebook and a schedule, how to research information and evaluate it, how to replace my a-motivational problems with motor-vation.  I exercised.  I fought with my natural tendency to consume way too much sugar-- something I still wrestle with now-- and forced myself to rest when I was fatigued.  I learned that I needed to find a balance between rest and challenging myself to do something new or hard or strenuous.  I joined a couple of t.b.i. support groups.  I consented to the use of a cane for long walks and in the winter.  I fell.  I got up.  My balance improved and I fell less often.  I understood that the professionals who said, "No major improvement after the first year" or "We can't fix this" were well-intentioned but wrong.

     I am not the same person that I used to be before my accident.  I would have been better off in many ways had it never happened.  But it did happen.  I have to deal with reality rather than a world of make-believe.  My brain is not as effective as it used to be.  Aphasia to a writer is a special form of hell.  And yet, I continue to improve.  I keep striving.

     Ten years out and I am still working my brain.  I am still being in charge of my own rehab.  I hope that you are also in charge of your own rehab regardless of how much or how little t.b.i.-specific treatment you are getting or not getting and regardless of what the well-meaning helpers say about your limitations.

sapphoq healing t.b.i. says:  It takes courage to dream new dreams.   

  

Aphasia, I Haz It

     The second neuro-doc told me that I have mild expressive aphasia, or more specifically a phonemic paraphasia [N.B. which some professionals characterize as being entirely separate from expressive aphasia] with pragmatic and substitution errors.  I also have the associated right-sided weakness that a physical therapist recently pointed out as still being evident a decade after my head trauma.

     I am conscious of my speech errors.  I know when I've substituted a sound for another sound at the beginning of a word.  I figure that if the person that I am conversing with understands what I am endeavoring to convey, no correction of my pronunciation should be forthcoming.  A few other people appear not to agree.  Sometimes I've said to them, "Do you understand what I mean?"  After their response in the affirmative, I've told them to s.t.f.u. about it then.  I've become less defensive about this than I used to be.  Now I will repeat the correction out loud and visualize it cementing itself in my brain.

     I also get irritated when I cannot think of a specific word that I want to use in conversation.  That appears to be an anomia and anomia is central to almost all aphasias.  [Note to testers:  Many of your test subjects know that if you point to the thing on your wrist, the correct answer is "watch" and when you point to the writing implement, the correct answer is "pencil."  Just so you know that, I thought I would tell you that].  Fortunately, I am able to hunt through my brain for a similar word.  Although the substituted word is not exact to my intended nuances of meaning, I get my point across.  The vast majority of people that I interact with do not recognize this sort of thing when it happens unless I point it out to them.  I despise the blank that happens when my brain blocks a word from me however I do know that my ability to pick a different word is evidence that my cognitive slowing has speeded up a bit. 

     Another difficulty that I have appears not to be part of expressive aphasia or of paraphasia.  When people talk too fast-- and I think this chiefly happens when a store clerk or someone on the phone wants me to agree to something (like "buy this object" or "agree to this contract")-- I lose the gist of what they are saying.  I've learned to tell them to slow down.  If they don't, then I tell them that I have a brain injury and that if they want me to understand them, they must slow down.  A second failure to slow down results in my termination of the interaction, or less frequently a request to speak with someone else like a manager.  I've resorted to taking someone with me to a store or having someone listen in on an important telephone call if contracts are involved.  I describe the second person as "my disability advocate" because it then becomes more difficult for the other party to dismiss the presence of my helper-friend.

     Like all of the complications that I've had due to my traumatic brain injury, I continually work on improving those difficulties that I can identify.  Movement is especially important to me.  I substituted my [severely lacking] motivation with motor-vation.  Social interaction [including interaction with other folks on the web], adequate rest and nutrition, and challenging my brain on a daily basis has become a lifestyle.  I do not believe that the majority of improvement after a traumatic brain injury occurs during the first year.  I've had significant improvement throughout because I keep practicing everything.  That which cannot be fixed [and with a t.b.i., there are things that cannot be fixed] can be worked around.  My philosophy is not one of "attitude" or "surrounding myself with 'positive' people."  Action is the word that sums it all up, with periods of rest so that way I have the energy to take repeated action. 

sapphoq healing brain damage says:  I would have gladly settled for a less-challenging life.  I am not "better off" because of my brain damage.  Certainly, I am financially much worse off and my career (that I fought so hard to have) ended.  I have not found any evidence that a god "did it" or even "allowed it to happen."  I have found that it takes courage to dream new dreams and even more courage to take action on the stuff that I say I want.  Anyone can make a list for Santa Claus.  Very few people will want to even attempt to drive a sleigh hooked up to a bunch of grumpy overworked reindeer.


A few links:

http://www.aphasiahope.org/

http://www.aphasia.org/

http://preview.tinyurl.com/n8r6zc6    [Neuro-psych Central, a pdf on aphasia assessment tools].

Inhibiting Those Disinhibitions

Before the brain injury, yes I cursed.  I was fluent in cursing in more than one language.  I was good at it.

After the brain injury I still cursed.  I remembered curse words in several languages.  I was even better at it.

Cursing derives from a primitive part of the brain called the prefrontal cortex.  If the prefrontal cortex gets damaged, our inhibitions loosen and we may find that cursing [which is much more a motor and emotional activity than language is] comes easier to us than words.  During the weeks immediately following my brain injury, every other sentence contained at least one curse.  This was true during ordinary activities and not just when I was emotionally aroused.

I learned how to mitigate my cursing.  I discovered that endeavoring not to curse at all was easier than attempting to limit cursing to certain situations.  After a time, I was able to restrict my use of curse words.  Today, I curse very little.  The curses flow when I am very angry.  When I am angry, I monitor my use of curse words.  Sometimes I have to remove myself from the audience and go off somewhere on my own in order to calm down.  I do consciously decide to curse occasionally to add emphasis to something I am talking about.

Meaningful language derives from the Wernicke's Area of the brain.  The limbic system is not involved in everyday communication tasks.  Wernicke's is part of the cortex-- not the pre-frontal cortex-- and thus language and its' interpretation is considered to be a more advanced function than cursing is. 

There are other people on and off the web that can explain the mechanisms behind both cursing and the development of language than I can.  The point is that I had to choose to learn to modify my disinhibited behavior [cursing] in order to regain some control over my life post-injury. 

sapphoq healing brain damage says:  If I had to choose a disinhibition, I think cursing is milder than something like taking one's clothes off in public or setting small fires. 

The Cane

Most of the time, the cane stands by the chair in a corner.  It is there for when I perceive that I need it.  I've come to suspect that I need it more than I am using it.

The cane was suggested to me as an alternative to a disabled parking permit.  I kept falling.  When I fall, I almost always fall to my right side.  I used the cane extensively at first. 

Summer came and with it my first pair of a certain kind of sandals.  Those sandals did wonders for me.  The first pair lasted me five years.  I went cross-country with them by myself for three weeks.  I was still falling with them, but less. 

Time passes.  I got a second pair of those sandals.  I used the cane less.  The dog keeps me upright when we walk together.  I don't fall with her now.

A friend of mine saw me walking one day.  "Where's the cane?" he asked.  He snorted when I informed him that I was walking 'fine' without it.  "What does the doctor say?" he asked.  I growled at him.

I've gone back to using the cane for walking any distance when the dog is home.  It helps.  The cane helps me judge where the ground is.  I am steadier with it than without. 

And I am good with that.

sapphoq healing traumatic brain injury

Today is a Good Day to Live

Immediately after the accident that addled my brain into thousands of broken and misfiring pieces-- and for some time afterwards-- I was not focused on living or even on surviving.  I wanted three things:  coffee, sleep, and the classical music station playing 24-7.  I cried when the mate would try to shut off the radio.  The classical music stayed on.  I insisted.  I ached.  I couldn't see right.  I was tired.  I slept 22 hours a day unless there was a medical appointment or physical therapy which I barely managed to drag myself to.  I woke up only to eat, go to the bathroom, and drink coffee.  I was unable to walk the dog.

The ability to do laundry [but not to iron] came back first.  My ability to curse became pronounced.  Since there was no rehab for me, courtesy of fighting insurance companies, I found a t.b.i. chat room online.  It was there that I learned that I had to be in charge of my own rehab.  Gradually, I became able again to compose typed sentences that made sense.  That was big.  I joined an e-mail brain injury support group [and was summarily dismissed for refusing to change my e-mail address!  The word "witches" in the domain was problematic to the good Christians administering the support group].  I found some other people around here who were also living with brain damage.  Life went on in spite of the side effects from the head-bashing.

I was leaning heavily toward atheism before my accident.  After the accident, I lost any feeling for any gods but not my wonder at life.  I don't miss that feeling.  That particular feeling led me down many paths prior to the brain drain and some of those paths were uncool.  To say the least.  I don't feel any anger towards any of the gods that I no longer believe in.  I feel nothing about it.  It is a piece of my old life pre-injury.

It's almost a decade out for me.  Some things have changed and some haven't.  I've changed.  We all change.  I've embraced the truism that yes we can be "good" without any gods telling us to.  But I no longer strive for "goodness" in and of itself.  "There are very few altruistic acts in nature," is the axiom that I apply to living life on a practical basis.  I have a joie de vivre, a celebratory anticipation of living.  The quest to be "good" is limiting.  I'm done with that.  

This summer continuing into the fall, I've spent hours upon hours sitting on the back deck studying the birds that come to the feeders, the bees that surround me, the plants that grow in my gardens in spite of my ministrations.  And I've spent some time in the woods on simple walks with the now geriatric dog.  I've learned a lot just by observing.  Those lessons are mine for now.

I've been thinking about spirituality.  Or so-called spirituality.  I'm not sure if it exists.  I have awe.  And wonder.  And I do feel inspiration.  But this spiritual stuff-- seems to me that the words "spiritual" and "spirituality" are catchalls-- I'm not really sure that this spiritual stuff actually exists.  Religion in the public discourse has become a bad word and the word spirituality has subsumed it.  I think that this is all there is.  I think that this is enough.  I don't need any supernatural or preternatural beings to help me define my morals.  

Spirit is from the Latin espiritus [I believe] and that word means "breath."  Spirituality is perhaps the stuff and the essence of life.  No more and no less.  When people talk about a state of being spiritual, I look for the evidence.  They appear to be regular humans to me.  Humanity is both fascinating and terrifying at once.  Life is enough and humans are also enough.  I don't feel spiritual.  I feel deeply alive.  And that too is enough for me.

It's good to be alive, yo. 
~ sapphoq healing traumatic brain injury and atypical neurology 

An Expert Talks About TBI

This vimeo video from Mt. Sinai School of Medicine gives an overview of Traumatic Brain Injury:





If the embed code is not working, the video can be found here at:
http://preview.tinyurl.com/nblqxbs [until it gets moved at some future date anyway].

sapphoq healing tbi

Please Don't Snort the Water

     I am adding "Don't snort water" to the list of rules to live by.  A boy on a visit to St. Bernard Parish [think: "county" in other states] in Louisiana from the state of Florida is dead.  He died from something called primary amebic meningoencephalitis.  How did he get that?   He was playing in a ditch full of water.  The water was found to contain Naegleria fowleri.  What's that, you ask?  It's a brain-eating amoeba.  Chlorine can kill the nasty little single-celled organism.  If chlorine levels are too low, every once in a great while a water-snorter acquires the nasty almost entirely fatal disease from the snorting of infected water [or soil] through the nasal passages.  Swimming in a freshwater pond, river, lake, ditch?  Don't snort the water.  Swimming in your friend's backyard pool that has a low chlorine level?  Don't snort the water.  Drinking tap water which may or may not be infected with the brain-eating amoeba?  Don't snort the water. 

     Don't snort water at all.  And don't snort soil either.  Or mud.  Or dust.  Because if you acquire primary amebic meningoencephalitis, the odds are against you surviving.  Less than one percent of those infected survive.

     And I thought T.B.I. was a kick in the head.  Briella [my post brain damaged brain] may be a bit sideways [although still brilliant] but at least [to the best of my knowledge] there are no amoebas sucking up my brain's cells.

sapphoq healing t.b.i. says:  This post is not meant to offend the loved ones of anyone who has lost their life to primary amebic meningoencephalitis.  I am sorry for your loss.


http://www.cnn.com/2013/09/12/us/louisiana-brain-amoeba-water-supply/index.html

http://www.cdc.gov/parasites/naegleria/

Broken Things

We are broken things, carefully guarded from
breaking even more or at least from telling
the rest of the world about us.  We shout out
to anyone who will listen.  We don't give a damn
for societal expectations any longer.  We show up
at doctors' offices in our pajamas, curse loudly
in public, eat with a fork in one hand or the other
as we choose to.  We are loudly broken, irritating
things clanging noisily in the wind without shame.
We no longer give a damn about what you think.

We are broken things, carefully guarded from
the rest of the world.  We have no shame at all.
We are loudly broken and irritating to a society
which expects us to shut up, not be heard, go away.
We clatter and clang noisily about-- laughing a bit
too shrilly, cursing too boldly at nothing at everything--
and we don't give a damn what you think about us.
We don't even regard what the doctors say in their
irritation while the good nurses wait at their sides
to write down every sainted word.  We are broken.  

We are broken things, carefully guarded from
anyone who will listen.  We are shrill and shameless
and irritating in our too loud pajamas and bold stares.
When we hurt, we yell and cry and stomp about
in our heavy dyke boots.  When we are happy,
our voices become piercing trumpets.  When we
are having sex, the world knows it.  We are apart
from the society which would just as soon forget us.
We are a part of a society that shuns us.  We are
broken, we are different, we are and remain just us.    


~ sapphoq healing tbi

I Don't Want To

I used to think that my complaint of "I don't fecking want to _________" was a work thing specifically related to Mondays and the first day back after a vacation.  I was wrong.

In the immediate months after the motor vehicle accident which so rudely interrupted my life, I didn't want to do much.  I wasn't working.  I slept and went to medical appointments.  Initially, I was sleeping for twenty-two hours a day.  When I was awake, I drank copious amounts of coffee and told absolutely filthy jokes and inserted curse words liberally into any conversation.  At some point, the medical appointments slowed down a bit and I was awake a bit more often.  There wasn't much that I had to do on any given day.  At the start of my day, I found myself saying "I don't fecking want to" an awful lot.  So this wasn't only a work thing!

Did my brain damage "worsen" my a-motivation with respect to my responsibilities?  I don't know.  I do know that it is more difficult for me to take initiative than it ever was before.  I wasn't a bundle of innovative energy in my prior experiences with living, for sure.  But this is decidedly different.

Nothing much is automatic anymore.  I have to mentally talk myself through tasks that were mindless before.  I've gotten used to it.  I don't mind it so much these days, although it does make for a certain amount of cognitive fatigue.  I function on a large set of internal lists.  The lists in my brain have titles.  Getting Dressed, Filling the Bird Feeders, Watering the Houseplants are three examples.  Each mental list has the steps involved in getting it done.  I find myself silently communicating each step to my self as I do it.  Thus, "go to the sink," "turn on water," "fill up the watering can," are all things I say to myself as I prepare to water the houseplants.  This goes on day after day after day.  I am not complaining.  I am just presenting a snapshot of what "Nothing much is automatic anymore" means in my daily living.  I am just stating the facts.

This part is not rocket science.  Having some cerebral re-wiring that is now akin to dirt roads rather than the freeways of yesteryears is bound to do something to functioning.  It's called cognitive slowing.  I am rather fortunate because my pre-morbid condition of having "too many thoughts at once" saves me from the worst of it.  When my mild expressive aphasia prevents me from retrieving a word that I want, I am able to substitute a similar-- if less precise-- word.  [I view the aphasia as being related to cognitive slowing, although as a layperson I am prone to error of course and it may not technically be related].  We cannot be saved from all things.  There are times when I am trying to do something trivial-- put a c.d. back into its' case or locate my house key-- and I have to ask my housemate to keep quiet until I succeed with the something trivial.  The nice neuro-psych doc at the brain and spinal cord injury hospital told me that my multi-tasking [in his words] "has shit the bed and it ain't coming back."  When the brain is forced to re-wire some of the broken or shorn axons, a few wires join up to different partners [one cause of cognitive slowing; think detours when driving] and some don't manage to join up at all.  The wires which don't join up at all cause a fine central nervous system tremor.  I have that one too.  Every time that a well-meaning individual says "The brain re-wires itself" in an awe-struck sort of way, I have to restrain myself from cursing at them.  Neurology is not that simple.

Neurology is complex.  Because of the complexity, any explanation which endeavors to simplify neurological events runs the risk of falsification.  Dumbing down can render errors in accurately grasping a concept.  Despite the possibility, I strive to come to grips with what did happen and continues to happen in my brain, courtesy of the brain damage.  Briella requires this effort.  [Briella is my post-injury brain:  Still brilliant, just a bit sideways at times].  Communication with others also requires the effort.  I keep striving to talk about my atypical neurology in a manner that respects the science.

I have recently begun to reckon with the a-motivation that I have been burdened with.  It is like laziness plus.  I think it helps me to call it laziness because if it is just plain laziness, then I can do something about it.  The minute I say "This is the brain damage" or even "This has been made much worse by the brain damage," I may as well roll over and veg out.  But something inside of me which is not broken or stretched beyond capacity drives me forward.  I wrestle with my laziness.  I am having some success in releasing the stronghold that the "I don't fecking want to" has had on me.  When I catch myself whining about what I have to do on any given day, I stop myself.  "I don't fecking want to" is no longer a luxury item in my vocabulary that I can afford.  I tell myself to shut up about it already and get on with the process of living as a viable, even if brain damaged, adult in society.  Ultimately, society is not required to adjust to me and my disabilities.  I am required to adjust to society.  And that is how it should be.  It's called getting on with things, whether I think that I want to or not.

sapphoq on healing tbi

On Suicide

Right-click to save to your computer if you want it.

Brain damage in the area of the left frontal-temporal lobe is fairly common.  That is also the area of the brain that is thought to be responsible for depressive symptoms.  Because some percentage of us do not want to be identified as having a psychiatric problem-- cripes, the brain injury is "bad enough" we think without adding the word "nutcase" to the mix-- we ignore the development of suicidal ideology or any indication of a mood disorder at our peril.  Our brains are damaged.  There are people who think we are whacked, odd, different, dumb, stupid, peculiar or weird anyway.  If prescription meds used as prescribed are able to give us a break from some distressing symptoms then why not?  That false ego that says, "I can do this myself" or worse yet, "I can blend in and be like everybody else" can kill us.  It takes strength and honesty to conclude that we cannot conquer all of this crap on our own.  It takes guts to ask for help.  Some of us who were already being treated for psychiatric conditions pre-injury will find that our old levels of medication no longer maintain us.  We need more.

Recognizing a need for professional assistance or a need for more of a previously adequate dose of psych meds is not a cause for alarm unless we make it so.  This insight is a sign that the left lobe of the brain is not all dead yet.  Insight originates somewhere in the left lobe.  The ability to put that insight into action rests within the frontal lobe.  If we are able to determine that something isn't working, we might choose to endorse ourselves rather than to put ourselves down.  Even better the ability to act on that knowledge [or to ask someone to help us] and locate a medical doctor of some sort who understands at least something about traumatic brain injury and will undertake to prescribe for us.

Presenting ourselves to that professional is a beginning.  We have to be willing to answer some background questions and to listen to suggestions.  This is not a passive operation.  Our appointments are a chance to list the symptoms that bother us and to ask questions about medicine or any other treatment which is suggested.  The reality is that public mental health or behavioral health clinics often do not listen well.  Locating some help within the private sector [providing our health insurance will pay enough towards said specialized help] might be the better option.

If you are finding any of the following:
     You want to kill yourself or harm yourself or have been flirting with thoughts like that;
     You have thought about how you would do it;
     You have access to the weapon or instrument of your choice [such as a gun, knife, blades, pills, a car to drive over a cliff etc.];
     You would do it if the random chance came up to off yourself;
     You think you wouldn't have to worry about stuff or that the world or everyone would be better off if you just weren't here anymore;   
s t o p reading this blog post, get off of the internet, and tell someone who will take you seriously what you have been thinking.  If the first person you tell does not understand that you are serious about hurting yourself or committing suicide, then tell someone else.  
Get to an emergency room if you must.  Being drugged temporarily [and hospitalized if you have to be for your own safety] sucks but quite frankly, there is no hope of improvement if you are dead.  It takes guts to ask for help.  
If you are able to promise to postpone taking action on your suicidal thoughts, then call your doctor's office for an appointment, show up at a walk-in clinic, contact your insurance company for a referral list, or ask a family member or friend to assist you with this if you need to.  Again, you don't know if these painful feelings could have been alleviated if you are dead.

What is distressing to me at brain injury conferences is the invariable presence of one or two survivors who have symptoms of major depression or schizophrenia or other disorder, are taking medication for their symptoms, but deny that they have a psych condition.  Psych conditions can arise from the impaired functioning of the brain or from the stress of living with a t.b.i. or some combination of the two.  They are separate disorders and we deserve treatment for them.  It stands to reason that if we treat all of the health problems and complications that arise, we will have better outcomes.  In other words, psychiatric symptoms just like the symptoms of our brain damage does not have to rule our lives.

With the brain injury, we can have many complications: photophobia, dry eyes, ocular motor dysfunction, hearing loss, sleep apnea, impaired limb movement, paralyses, motor disorders, language disorders, structural changes in our feet as well as gait changes, fatigue, obesity, addictions, slowed cognitive functioning, and more.  We don't hesitate to pursue medical alleviation for any of these issues.  Why is something with psychiatric implications different?  The bottom line is that many if not all thought and mood disorders have neurology as a basis, or at the very least contributing neurology.

Yes, there is certainly widespread discrimination [screw the nami mommies and their big pharma monies and their talk about "stigma"] against people who have psychiatric labels.  Guess what?  There is discrimination against brain injury survivors too, just like any other potentially disabling condition.  If you haven't run into it, you probably will.  [If you don't, please contact me and tell me what state and country you live in. I want to migrate there].  
I've lost friends to suicide.  It isn't any fun. Suicide hurts those that we leave behind-- whether we think it will or not.  Brain damage, like any other changes in neurology, brings on changes in one's life.  Don't make this any harder on yourself than it already is.  Commit to staying alive and to taking care of your mental health, just like you would the rest of you.

sapphoq on t.b.i.      

No Chickens Here

Through the years of living with my traumatic brain injury, also known as brain damage-- yes, it is brain damage-- I have met bunches of people who also have had this life-altering event.  There is no "t.b.i. personality," period.  That's my opinion.

Oh, I know some of the professionals have tried to pigeon-hole us into neat little categories in the manner of professionals who do not want to admit that some of the nastier things in life can happen to them too.  I've heard that we t.b.i.-folks don't have a sense of humor, are rigid and demanding, need structure, need routine, are suited to work at menial jobs if any at all, got religion to a fault, are given to fixations and obsessions, can't can't cant.

I had to learn not to allow the professional literature, research, and downright misunderstanding define me.  Yes, my brain is altered and skewed.  No, my brain will not ever return to pre-injury status.  Those are facts.  Yes, this is still my life.  No, I don't agree to give my power away.

There aren't any chickens in this holding cell called "post-injury brain damage."  To be sure some of us are cantankerous.  At times we may be fearful-- just like anyone else in the human race.  I am delighted to have found a certain culture among t.b.i.-ers.  Not as defined as deaf culture perhaps, but it is certainly there.

It takes guts to admit over and over again to a series of professionals what things we are still having trouble with, what happened, how we "got this way."  It takes restraint not to knock them off of their smug office furniture flat on their backs.  For every great and wonderful and dedicated helping professional, there are at least four more that deserve to be eaten by Baba Yaga.  Still, we keep going and we manage to live.  Some of us even get to thrive.

So just remember, our brains may resemble scrambled eggs.  But we are not chickens.  Dinosaurs maybe... 

Regrets

Yes, I have regrets.  Not so much mental masturbation anymore because I've been at this for almost a decade now.  

If only the accident hadn't happened.
If only I had accepted that weekend position.
If only I'd never gone back there to work.
If only I had more gumption.
If only the fatigue and the brain fog wasn't killing me.
If only the professional vocational rehabbers had actually done something more than talk.
If only my perception problems weren't.
If only.  If only.  If only.

If only I had been someone else.


But I am not someone else.  I have my life, not someone else's life.  I am the possessor of my life.


To be honest, all of my problems did not begin with my car accident.  I've let plenty of opportunities go by.  I've done some rotten stuff.  I've hurt people.  I did not give it my best shot.  I was lazy.  I wanted to look better than I was.

I was a human being.  I still am.   


I can't fix the past.  I have a chance to change my future.  What am I going to decide to do?

sapphoq healing t.b.i.   

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.