If It's Worth Having, Then It's Worth Working For

     Out of all of the professionals and specialists that I've dealt with in respect to my traumatic brain injury, there was a grand total of one-- and only one-- who told me that I was capable of learning how to control my impulses and harness my dis-inhibitions. Let me explain further:

     Go to any brain injury unit and you are likely to find patients who curse fluently. I'm not claiming pre-injury innocence. What I'm saying is that cursing originates from the more primitive, reptilian part of the brain located deeper in than language is. Hurt a brain, you will probably hurt communication but the cursing may remain more fluent than language skills for a time.

     I was talking with a friend who is eighteen months away from his stroke. He told me that he was having trouble with just blurting things out. He was astonished when I said that he could learn to govern that. Blurting things out and cursing both have a similar emotional component to them, to my way of thinking. 

     I also had experienced those sorts of demands from my fractured brain. I learned that when I was feeling a pressure to "Say it, just say it!" that was when I almost certainly should not "Just say it." And the cursing thing? I found out that it was easier for me to strive not to curse at all than it was for me to give myself permission to curse at some times and not at others. Learning not to insert the f-bomb into every other sentence and learning not to blurt things out were two things that helped me feel some semblance of control during a time when the world was still wobbly and rotating slowly to my left.

     Was it difficult and challenging to develop some self-discipline? Yup. But I worked on it and I continue to work on that because I have found the results to be rewarding. Not feeling driven to tell my very proper mother-in-law filthy jokes over dinner in a restaurant made the meal go better. I was happier being able to blend in a bit. And m.i.l. certainly was happier too.

     Do I curse now? Yup. A lot less than post-injury and less than my pre-injury days too.

     Self-discipline is something that I found to be worth working for. I tell myself daily, "Get up, clean up, walk the dog, go to the gym. Your brain damage is not an acceptable excuse for your laziness." And so I get up, clean up, walk the dog, and go to the gym. I still have to rest during the day however I am getting stuff done now. And that feels good to me.

     There are bunches of stuff that is no longer automatic for me. I have to think through some tasks before I am able to do them. I have to concentrate on where my feet are going as I walk so I don't fall. I have to have things put away in the same places today so that I can find them again tomorrow. Supplies for cleaning the floors go on one shelf on the back porch. The laundry bag lives next to the washing machine. The stationary, bills, check book, stamps, and pens are kept in the desk. I still struggle with organizing today but not as much as I used to. I can get more done because I am not stumbling around the house in a blind rage unable to find the vacuum cleaner bags.

 sapphoq healing t.b.i. says:

If It's Worth Having, Then It's Worth Working For.

If It's Worth Having, Then It's Worth Working For.

If It's Worth Having, Then It's Worth Working For.

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. 

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.