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. 

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.