My Bad Bad Brain

Keeping the world at bay is one of the things I have learned to be necessary to master. The world does not care about the workings of an uncelebrated mind. If you begin to show distress of the physical or emotional, you are asked to find a way to cope that minimally involves other people. Any variances make people suspect that you may suffer from one of the plethora of anxiety disorders, or possibly a bi-polar illness. Unless you chat up the voices they won't try to make you schizophrenic but that isn't for sure.
No, I am not overly-anxious.
No, I am not mentally ill.
No, I do not have a drug problem.
Yes, I do get pissed off because I have a constant companion. A brain injury.


Peace doesn't last. Not in this world and not within my brain. Continuing to post the stories of the people who entrust me with their most precious gifts- that of their presence in the moment, is one of the things that keeps me centred. Posting about my own true self, and my daily battle with my own brain, is hard but necessary. Before the Internet I had journals. Each New Years Day I ceremoniously burned my journal of the year gone past and considered myself renewed. This ritual and the self congratulatory feelings of making it through another year were important tools for the time.

Adrenilin is my greatest enemy. For some weird chemical reason, my already hyper-sensitive body got stuck on overdrive the day I got struck on the head.
This is only cool when you are a hunter gatherer. It would seem that with this aspect I could have been a rocket rider or a stunt woman, but the companion to nonstop adrenilin is constant exhaustion and the after-effects of same.
I got through my teenage years by drinking copious amounts of alcohol. Being blitzed was the only thing that shut the tornado in my mind up. Back then, I thought all of us, every single person on the planet learned how to wrangle brainstorms.
I did not know any different because I never thought to try to explain the mental chaos. I could see in my mind, myself and my memories, and this cavern of static which was not me but was settled upon me. If I tried to look beyond where the storm was, I would faint. Mostly this happened at night. The amount of alcohol necessary to ignore the storm was just shy of lethal. Luckily, I stopped drinking and started an exploration of holistic alternatives in my twenties. Although it was mostly just an interesting waste of time, it saved my liver. Turns out I needed it!

Describing a brain injury is like trying to breathe on Mars. You need certain tools to make it possible. I am unpossessed of these and continue to try to make sense of something that is utterly irrational. I consider my life to be a huge triumph of will over circumstance. The greatest of all victories is the one of seeming to exist within normal parameters. I pass for a body possessed of an unmedicated untainted brain. My personality comes across as eccentric or so I am told, but my ability to focus utterly and completely on what I am doing in my work outshines the quirks. I have learned to be charming. I have learned not to care what other people say. But I have not learned how to just live a balanced life. I hold it to be within the realm of the possible.

One major side-effect of taking brain medications is weight gain. I have to suck it up for as long as I need to earn my daily bread. A side-effect of weight gain is depression. Not content with gifting me with all these bad-fairy blessings, the Universe also gave me the gift of hyper-sensitivity. This is a fairly common thing that happens to people touched in the head. It means that certain senses become like super powers that you cannot turn off. You have to learn to ignore them. The bugger of it is that the injury wont LET you ignore them so again, you end up taking medication. So---- the upshot is that when you should be out and about enjoying the day is likely when a brainstorm will hit.

I went to the Pool today and forgot my ear plugs. Sounds like a minor inconvenience I am sure. -pound pound pound -

Frequently, I wonder what would have been my life-path without the bonk. There is no gain to an unbridled intellect. My grande focusing skill is only possible with medication. The sad thing is that although I can focus, I loose my brilliance.

My brain whine. My sorrow for what cannot be.
Is it shades of the possible I mourn or just sour grapes?
Many of my preferences and life choices were made to accommodate my injury. No that is a lie. *ALL* of my lifestyle choices were made this way. I have to live small to just live. Every day I open my eyes is a miracle. Odds are that one day I will stroke out at an early age or succumb to an aneurysm. No need to hurry the demise.

But my friends, life is a difficult choice.

-------------------=

When patterns are broken, new worlds emerge.
= Tuli Kupferberg

What is TBI ?

This is for the emailers.
Those who found this blog by chance or by keyword.


What is TBI, you ask?
And why is it a problem in one who seems so capable?

TBI is short for Traumatic Brain Injury.
There is more stuff online about it than you could read in ten lifetimes.
This is a good start here - the Mayo Clinic's guide.

Why is TBI a problem?

Like many with brain injurys my memory is impaired, in fact completely unreliable. My specialty seems to be taking two or three similar events and cobbling them together into one false memory with true details. It is...... something very humbling.

My life is lived by lists and reminders.
Things that I have planned and looked forward to, frequently go by without comment.
One of the reasons I blog stories and little remembrances that elders tell me is precisely because of the forgetting. We are nothing without our memories. When someone gifts me with one of theirs I wish to treasure it. Some of my clients know that I have an impairment. Some of my management and supervisors know.. most do not. It is not who I am - it is just something that affects me.

It was very difficult to get my life in order to a point where I could manage my own affairs. My bills are auto-debited, my paycheques direct deposited and a whole lot of clocks and timers help me not get lost in my head. Because I do. If I do not keep on track hours bleed by without my realising. And yes, I drive a car. Not at night and rarely on the Highway and only because I get yearly brain scans.

The great struggles, the soul wrenches, are things other people take for granted. I was in my 20s before I found out that other people did not *see* sound, nor have nonstop adrenilin 24/7.
On bad days my brain physically hurts. Bright light sears and sound looks like a mass of jumble and feels worse. On bad days my legs move a little awkwardly and my feet kick out involuntarily every now and then. My eyes rolls my jaw sets in a grimace and I am told I just look incredibly annoyed. Imperiously so. Doesn't it figure that it would settle on me with a mantle of delusional grandeur?

All that I can deal with. Perhaps not always well.
What is contentious for me is the medication. S.
Alas my scrambled brain has forgotten how to shut down for sleep. It does shut off for an hour or so but never more unless I am completely exhausted. This means I have to take medications or within 3 weeks I become unable to function. --Medication--- see the rants I post every time I have troubles. Medication is a curse and a blessing in one. Without it --- if you are not financially independant you could very quickly become homeless. With it, you can manage to function within societal norms but at great cost. (!!!!!) Brain meds are pricey in all ways.

THAT is my world of TBI.
It's all I have.

Wellness Versus Chaos

Like so many people who look great, I have my secret invisible injury to keep me company day in and day out. Some days it is far away from me, and others right in my face. It is completely impossible to explain to people who have no experience with it, and sadly the very worst to deal with are one's own family.

I had a very bad few days for no apparant reason at all. I do not take time off work for these things but I do have to come home and go to bed in a very dark room alone. The people I work with and the people I work alongside never have any idea that I could have anything less than a perfect life.

Oh this looking good thing. Because of my lifestyle choices, alot of people assume I am independantly wealthy. After all, I display all the trappings of success including a workweek most people would chomp their teeth off to get. I work 30 hours a week at most over four days. At most. My clothes are beautiful and bountiful and my car is shiny and newer, and I have a ridiculous penchant for jewels, but no, I am not wealthy. Not in the material sense at least.

Bad day. bad night. Another bad day, another bad night.
What did my own family say to me?
"Don't you think you will feel alot better if you would just deal with it and get over it?"

Well, yeah that would be great. Could you send that memo to God about reversing brain injuries? I am sure He will get right on it.

So I still take these damn medications, and wonder if they do anything other than make me fatter and sleepier. I look so good. Plus-size good but good, so they tell me.

Does this mean anything at all?
Not to me.

If I won a lottery prize of any substance, I would go off my meds and take a year off somewhere to see what exactly would happen. I know I would not sleep very much, and I know I would not be able to stand having many people near me, and possibly I might have a seizure but ......

It doesnt translate to text this preoccupation of mine.

Like Pinocchico I just want to be real.

Who Knows? Not me!

OH bother what a bloody nuisance all this change is.
I love my routines. Noone messes with my routines. (except my office, OF COURSE.)
hmph


----*

So yeah: cancer cancer everwhere.
I had a surreal experience tonight while ordering from my Avon lady.
Somehow in conversation it came out that she too, has a brain injury.
She had surgery for a tumour 2 years ago.

We are everywhere!

----*

Still havent linked the shiny things to here.
Sorry. Will do after tomorrow.
Had a busy weekend of doing nothing. I did my Volunteering shift but really only managed to clean my room and make pretty labels for my daytimer.

I told you there was a reason for this blogs name.
Big rants. Small lives.

"Is that nothing to you?"

"Your dignity is not just rubbed in the dust. It is trodden underfoot and spat on. Our people are being killed as if they were but flies. Is that nothing to you who pass by? What must we say that we have not said? 'God, give us eloquence such that the world will hear that all we want is to be recognized for what we are - human beings created in your image'" (Tutu 101)



When you suffer a blow to your dignity, it is a wound that takes a long while to scab over.
------

Today I realised that I would like to spend a working decade making a difference to people in poorer countries. We have such wealth. They have so little.
And I, do I want to be one who passes by?
One who goes to sleep as if it is nothing to me?

It is something to me. Something big.
My own problems have created in me a huge need for social justice within my own realm.
I would like to spread it further.

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The storm in my brain spoiled my birthday :(
Wthe tornado is there right in front of my mind's eye, I get a screaming headache and my whole left side goes into excruciating pain. No, oops it'e my right side. I get more dyslexic as the years go on. That's so typical; my getting it wrong so wrong.



I am without grace tonight.
Utterly.


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The Price of Being Here * * *

It was almost 5:22 pm when I remembered that on Thursday's I must pick up my meds.
Today it is new meds.

It was $64.00
For one week of meds.

------------------------ *

I am soooo depressed about money...........

♥ ♥ ♥

Follow-Up

Tweak time. Increase in drug doseages.
Accolades for still being alive on the planet despite all odds.

Hollow victories. I look great, everyone tells me so.
I look so well. This almost makes me insane to hear.
I feel awful. Going to the Doctor upsets me greatly.

My Doctor could not be more caring or compassionate and has advocated for me in ways that most patients can only dream of. He has taken my disorders and injuries and made a roadmap for me, one that I can follow. He listens to my weirdness and never does anything to compromise my dignity. You cannot imagine how wonderful that is.

Not many years ago, before I had any recollections about accidents and injuries, I was at another Doctor - - - that is one of the worst memories of my life.
THAT Doctor never bothered to look in my medical history, never bothered to look past the *You Look Great* thing. I was a very pretty girl back then.
My Doctor of the time pretended to listen to me but wrote in his files: Neurotic.

My brain was scrambled and I was trying to make sense of all the dots I saw and the teflon skies ... the sleep paralysis and the flashback tremors. I thought everyone experienced that!
It floored me to find out other people did not have them.
Here I had always thought everyone knew some secret coping method that I wasn't privy to!

That Doctor drugged me into oblivion and back until I rebelled and tried to stop taking those drugs. He got very angry and threw me out of his practise saying I was a spoiled brat.
A spoiled brat who "wanted to be sick."
He thought I was making it up.
Of course if he had bothered to check my medical history he would have seen a brain injury, and multiple severe concussions.
But he didn't bother.

$50k in jaw surgery, dentistry, realignment and.... 4+ years of wired up hell.
Do I sound angry?
Not anymore. Just sad.
When I have a bad day, I remember Dr. R-tt--berg and his complete lack of professionalism and compassion.

Thank God for Dr. M-c---- who has restored my faith in the Medical Profession.
He listens. He researches. He prescribes appropriately.
He consults with other Physicians and when he does not know he says so and sends me to someone who might should or is able to figure it out.

So, hope reigns.