If You Aren't Going to Help Me, Then Get Out of My Way

     I was at a workshop recently where leaders of some committees were speaking. One such committee had the title "special needs" in it. The man was speaking about an experience that he had had while volunteering at a day program that warehouses survivors of traumatic brain injury five days a week for five or more hours a day. 

     The earnest volunteer found out that a woman who refused to read anything in a group setting-- she would throw the book across the room whenever asked to read-- actually could read words if he pointed to them individually. "They run together," she shrugged when carefully questioned, "so I tell people I can't read."

     The volunteer did not know that eighty percent of t.b.i. survivors have visual perception/ ocular-motor dysfunction/ visual processing problems. "The eyes are an out-cropping of the brain," I told him. "Large print helps because we need more 'white space' between the words." I could tell this was new information to him. Why oh why didn't the day program address this problem among its' customers? We are fortunate to have some competent physicians in the area who are well-versed in complications after a brain injury, including several eye docs.

     The book-throwing woman did not have to suffer the humiliation of being asked to read over and over again in spite of her protests. The company who ran the day program certainly could have fostered a visual eval for the woman. The visual problems that we have are not related to visual acuity. [Visual acuity is what is measured by the standard vision exams. Think Snellen eye charts and 20/20]. 

     Brain injury professionals in various disciplines need to communicate with each other for the good of their patients and customers. I expect competent treatment when I avail myself of any medical or other professional services. That an agency which conducts any sort of day programming for brain injury survivors would not educate its workers and volunteers about a very common complication for us is inexcusable. Period.

     Traumatic brain injury is frustrating enough, especially early on after diagnosis. To have professionals not know how to address a basic complication really sucks.



     Here are a few random stats and factoids about complications of traumatic brain injuries:

80% of survivors have visual perception/ocular-motor dysfunction/visual processing problems.
     A thorough eye exam by a t.b.i.-competent professional is a must.
     Large print may help [because we need more 'white space' in between words].
     E-readers with anti-glare screens may help.
     Wearing a visor may help.

20% of survivors have hearing deficits due to their t.b.i.

50% of survivors develop sleep apneas, either due to the t.b.i. itself or due to obesity which may come from inability or lack of motivation to exercise. Ditto diabetes.

Some percentage of survivors develop clinical depression due to damage in the left frontal-temporal lobe. If there was pre-morbid depression, symptoms may accelerate because survivors need larger doses of their psych drugs than before.

Incidences of addictions to drugs including but not limited to alcoholism increase after a traumatic brain injury [in comparison to the general population].

Survivors who were clean before their traumatic brain injury run an increased risk of relapse [in comparison to relapse among non-t.b.i.ers].

and finally:
We do have well-developed senses of humor. We have to in order to deal with some of the less than competent "professionals" that we are exposed to.



     The idea that "Traumatic brain injury survivors don't have a sense of humor" is a myth. With the lowering of our inhibitions comes the ability to laugh at what we truly find to be humorous and not to laugh when we don't think it's humorous. Those professionals who insist that we no longer "get" jokes usually are the joke.



sapphoq healing t.b.i. says: The onset of brain damage frees us from fulfilling societal expectations. This upsets some professionals. It leaves them to spin their wheels because we "don't co-operate" or refuse to conform to the status quo. When coming out of a-motivational syndrome into a level of determination that was missing in early t.bi. survivorship, we deserve to experience for ourselves the pushing against any limits imposed upon us by professionals. Sometimes, even well-meaning professionals believe in the fiction that surrounds life after a t.b.i. Sometimes, professionals forget that we are the experts on our own lives. If that hurts a professional's false ego, oh well. 

Oh Go Stuff Your Happy Happy Joy Joy

Today, as usual, I was tired.  I slept deeply last night.  I ran out of energy mid-afternoon and slept for two hours.  With dreams.  This is the fatigue that does not let up.

Different things throughout the day gave me wholeness.  A house wren singing a mating song.  The new kitten jumping up to the toilet paper roll, neatly tearing off one sheet, and tasting it.  The happy dog ready for another walk in the quiet neighborhood.  Smells of a stir-fry drifting into the bedroom from the kitchen.  Clean sheets and washing machine and a cat in a curled up in a basket and a full tank of gas and the stillness of my thoughts.

Different things assaulted my irritable brain today.  An acquaintance with a too-loud voice and a message that he felt compelled to "share" with the rest of us.  The infiltration of New Age batshit woo-woo into conversations held by those that I was surrounded by.  A feeling that I didn't belong.  I could not relate.  The fish stinks from the head back.

I want to run away.  I want to go to the triple A and point out places I'd like to see on the map and buy train tickets and hotel reservations.  I want to pack a light bag with a set of wash-and-wear quick drying clothing, a few toiletries, and a second pair of shoes.  I want to travel alone and break bread with people that I've never met.  I want to go to a park and dance to music with the crowds.  I want to eat at a small diner away from the masses.  I want to hang with the common people in strange places.  I want to journey to more places where I've never been and retrieve more pieces of my soul from those places.

I want to have hope.  I want to have hope that is real hope based on realistic probabilities.  I am tired of the false hopes pedaled by the professionals who think they know better than I do what I want.  I am tired of settling.  I've done far too much settling before my brain damage was inflicted upon me.  I am done with settling.  I am anger.  I am rage.  I do not yet know what my true options are.  I must go find them myself.  Because the cast of helping players bombed the stage.  The play did not hold my interest.  I am wandering out of the theater.

Today, as usual, I was tired.  Today, as usual, I sought a place of people where I belong and I could not find it.  Today, as usual, I became anger and rage within my own true self.  Today, as usual, I felt the sadness and the grief of dreams that do not let up. 

sapphoq healing t.b.i.     

Lazy

I think I've talked about this one before.  But I will talk about it again anyways.

I used to go to a t.b.i. support group on Saturdays run by one of us.  We used to talk about stuff that got in our way and how to work around that stuff.

One Saturday [or maybe more than one Saturday] I was talking about my laziness.  The survivor-facilitator encouraged me to think of this as something that came out of my brain damage i.e. my messed up neurology.  I rejected this and still do reject this thinking.  Here's why.

If I claim that something is organic and arising from my traumatic brain injury, then I am saying that it cannot be fixed.  That I have to work around it.  I refuse to believe this of my laziness.

I am willing to admit that perhaps the brain injury made my laziness worse, or makes it harder to deal with.  I know I have some problems with initiation now.  That I can identify as being from the brain damage.  I know that I also have brain-related fatigue and that particular ailment called "fibro" as evidenced by all of the trigger points that I have.  Fine.  But laziness as a function of my brain damage? -- no.

My laziness is mine.  I own it.  You will not deprive me of it.  When I say that I am lazy and not "my brain damage causes me to be inert," I am claiming some hope for myself that I can change this.  So yeah, I am lazy.

What do I mean when I say I am lazy? I am lazy about doing housework, throwing out stuff, organizing my belongings. And not lazy? I am not lazy about walking the dog, doing laundry, doing anything on the computer.  In other words, if I like it I will do it.  If it is not interesting, I won't.

I've tried to make charts and todo lists of stuff to do everyday-- like organizing, throwing away papers, and some form of housework.  The end result is that I can make wonderful charts.  I just cannot follow them.  [This may be related to my inability to follow a pattern for crochet but I can make my own patterns].  So the chart thing just isn't working for me at this time.  I've tried "attaching emotion" to the stuff I want to get done, like playing music during housework [suggested in the t.b.i. support group] but I would forget to play the music.  The end result was I didn't get much of any housework done.

I've read in a few places that developing a new habit takes thirty days or something.  The new approach is to take each thing that I want to do and endeavor to do it every weekday.  I've actually had better success with that. 

I am also tapping into my determination.  That same determination that I used in order to learn how to rewrite understandable sentences is still available to me today.  That same determination that drives me to research a story or event or organization is part of me.  That same determination that caused the head of investigations at my own job to refer to me as a bulldog did not die during my car accident.  I know I am determined.  Choosing to use my determination to combat my laziness is working for me.  And that is what I am doing.

Things may be more difficult for me to accomplish at times due to complications from my brain injury.  I do have problems with initiation, organization, and fatigue.  I also have this determination stuff.  If I believe that I am more than my problems, then I can do more than my problems.  I do not have to live like an blob void of all adult responsibility, only doing stuff that I want to do and ignoring the rest.  This is not a fantasy land.  Houses get dirty and disorganized when not taken care of.  Even if I was to hire a housekeeper [again-- I had one for awhile a few summers ago when things were bad], there is still stuff that I have to do.

So I am using my determination in order to conquer my laziness.  And screw the rest.

sapphoq healing t.b.i.

Working on my Visual Perception Problems

My traumatic brain injury left me with some rather outstanding perception problems.  Because I have diagnosed permanent double vision in one eye, I have been treated to the sight of folks with two heads, four arms, and two torsos which extend into one set of hips and two legs casually jogging in my neighborhood.  Because I have been diagnosed with ocular-motor dysfunction and a visual accommodation disorder, objects and people appear as having ghost lines around them, especially when fatigued and my brain is too tired to block those ghost lines.  (And let's not forget the photophobia which is responsible for me limiting my driving at night to "only local and only when not tired."  And my fatigue from dealing with all of this which led me recently to switch to an e-reader which is set to make reading easier for me).  


I know that first paragraph sounds like I am whining.  But really, I am not whining.  I want to tell you about Google Sketch-Up®.  Sketch-Up® is a three-d modeling program that is available at http://sketchup.google.com/download/ as freeware.  [If someone is a professional and wants more bells and whistles, they can buy a professional version from Trimble].  I like three dimensional stuffs and I also like animation.  I've been endeavoring for some time to use DAS®, Bryce®, Blender®, and Hexagon II® and I've had no success to speak of.  [Those four programs were all available as free legal downloads a couple of months ago from their company's website.  I believe the special offer may have ended.  At any rate, I got in on it the very last day].  Those programs were too hard for me to learn at the present time.  One night I happened upon Sketch-Up® and promptly downloaded the free version.  

In short order, I found that I was able to produce rectangles, circles and 3d text.  [If you want to see a few of the things I've made, google "warehouse lovemakesafamily" to find some examples that I've uploaded to Google Warehouse®].  After watching a few free tutorial videos,  I went on to make several skyboxes, some other shapes, and a box with a chaffeured lid.  As I continue to work with my digital camera and computer art, building in Second Life®, and Google Sketch-Up® I've noted some improvement in the way that my eyes work together when I practice  my vision therapy exercises.  This improvement I must still label as "subjective" since it has yet to be confirmed by my t.b.i. eye doc. 

Sorry to the dedicated optimists who want me to say that my vision problems are totally abated, cured, or not permanent after all.  It simply ain't so.  I have to deal with my situation as it is and not engage in dreams of being "almost or exactly 100%" of who I was before my accident.  I am very fortunate to be alive.  I would have been better off-- certainly financially and in some other ways as well-- had the motor vehicle accident not happened.  But things are what they are.  I continue to deal with Briella [my still brilliant brain, just a bit sideways] on a daily basis.  When I think back to how far I've come from the early days of sleeping twenty-two hours every twenty-four, relearning on the computer how to write a complete and organized sentence, playing Tetris® because other T.B.I.ers told me it would "help" with my eye-hand coordination, and myriad discussions about the names of the seven dwarves, I smile broadly and say to myself, "Yup I done good.  Now I gotta keep striving."

sapphoq healing t.b.i.

Fatigue and Fog



     I lost a bunch of weight and have kept it off for a year now.  With the weight loss, my sleep apnea receded.  Unfortunately the fog and fatigue from my fibromyalgia (which I didn't have before the accident that gave me my traumatic brain injury) remains.  So although I am no longer sleep-walking through life, I just don't have the energy that I used to.  On top of that, I have various aches or trigger points which seem to be diagnostic of the fibro.

     Unlike some unknown to me percentage of folks with fibro who treat it with prescribed drugs, I take no drugs for my fibro.  I deal with mine through a combination of exercise and extra rest.  There are days when I force myself to get up out of bed.  There are days when I suddenly have to take a nap.  And there are a few days where nothing much at all gets done.

     The brain fog I combat by the little cognitive games I find on the net-- use your search engine and type in "brain games" if you want to try them-- which are designed for kids but do force me to think in a logical manner.  I also do research for a few of my blogs as well as sudoku.  From time to time when I get stuck on a problem, I ask myself what a logical person would do.  If I cannot come up with any thoughts on that one, I call up a logical person and ask them for ideas.

     One of the things that I have learned throughout my brain injury is that there are times when I have to say "enough."  When there are events in life which yield more stress, then I have to cut back someway somehow somewhere so I don't get all twittified.  An example is that my list of daily todos has gotten shorter over necessity.  Another example is that when I feel burned out, I know that is not the time to volunteer to help other folks.  The energy just isn't there.  When I take on too much, I pay for it.  I hung up my superman cape some years ago.  After my brain injury, I kicked it to the curb.

     If I don't take care of myself, then I cannot be of service to others.  If I say yes to every little request that comes along, then I get fatigued and brain dead.  If I never say no, then my yeses won't mean anything.

     I suppose some folks learn all of this without having had a brain injury.  I was a go-getter who kept going long beyond any reasonable person would have gone.  Keeping my health as my first priority means I can no longer live the way that I used to.

sapphoq healing tbi

Sometimes

Sometimes I feel that I hate you.  You have interrupted my career, cost me my livelihood, made for numerous fights about money and the lack thereof now that I can no longer work full-time.  I am tired.


I am tired of being tired, tired of having to explain why it is that I do not understand this or can no longer do that safely.  I am tired of the betrayal.  You robbed me.  Damn you.


I am no saint.  There is never a time when I feel that I love you.  But there are times when I know that I notice the little things more-- the touch of a lover, the song of a bird, flowers blooming, weather shifts, the moon.  I am alive and that sure beats the alternative.


Sometimes I tell myself and others that my brain's name is now Briella-- still brilliant but a bit twisted and sideways.


Sometimes I mourn the old, sometimes I celebrate the new, sometimes I can just be.

sapphoq healing tbi

Chatter

I am spent and weary with the requirements of a world which I no longer understand.

*sapphoq in need of healing

BRAIN FOG 4/2/07

While surfing around Medscape, I found a reference to this website about Post-Polio Sequelae:
http://postpolioinfo.com/PostPolio/
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