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.