Tag Archives: TBI

Working Within the System

Why is it so hard to fight for our rights? As Disabled persons we have a greater need for services than many but either by our own inabilities to disseminate the proper information to the proper authorities, coupled with, the inflexibility of a system that has fewer and fewer resources and people who are not properly trained to handle our population . . . nor necessarily have the attitudes and empathy to know that, for most of us, our mistakes are not our fault.

I am on disability and lost my benefits January 1st, not because I was trying to beat the system but because I couldn’t understand and follow the system. There is a chance my benefits will be reinstated, of which I will be eternally grateful if they are but there is still a huge, dark cloud floating above me. I need to appeal to nullify the 16+K they have been sitting there watching for several years as it accrued without my understanding of the system and my repeated thinking “Surely this will be okay, am I doing anything wrong?, if they haven’t contacted me, I must be okay.”

It took every bit of my courage and preliminary preparations to handle the 2+ hour interview but I did it. As I was sitting there, my legs were cramping continually and I had to stand as I was talking to her, my neck and back were in pain, and my skin was itching all over. This as I was telling her the diseases and conditions which brought me there in the first place.

I still have to go to an Accountant for the first time, at a cost I can ill afford. And the Appeals process still needs review. Finally, I am locked into a set amount of money. If I go over it by even a dollar, I lose my benefits . . . for good. So, this case I am working on, I can’t earn more than that amount and I often have to work extra hours so those hours will be for free.

There was a time, years ago, when my mind wasn’t as impacted as it is now, that I had to have the school districts I was working in to pay me $2 less an hour than was contracted just so I could work the hours needed.

Yes, I am Disabled, but I need to be a productive, contributing member of society. I need to be of service. I need to help people, and I know there is a purpose to my work that God has in mind for me. So I struggle through the morass of the system, hoping they see I am worthy. And pray – a lot.

Target . . . Me

I was reading a new blog, Awkword and what Michelle has asked us to do in choosing a target audience and I realized not only do I not have one I am aware of, but I don’t know who the target me is.  I have lived alone for 20 years. No dating, not a really active social life, and though there are some reasons why, I also find myself saying, once in a while, why not?

My writing can tend to be somewhat, or very, on the dark side.  I have a low to mid grade bipolar condition.  It keeps me more on the depressed or withdrawn section of life.  I also have a boat-load of physical issues and have for all those years and before. So I suppose I might draw people who have similar issues.  These can range from the conditions: once I was on O2 for 2 12 years and have had asthma, chronic eosinophilic pneumonia, and emphysema in greater or lesser strengths for all my adult life.  Fibromyalgia dogs me. I lost more than 3/4 of my intestines and gall bladder when I went septic and my systems shut down and was in a coma 3 weeks.  When I woke it was to complete loss of muscle memory.  This past year I had back surgery which didn’t help. I’ve had a migraine most of the last three months.  See what I mean?  There is more but that alone can make for a target audience.

I have Traumatic Brian Injury – caused during the coma, but which creates its own set of problems.  My memory is not always reliable. I suppose it is an understatement.  My sister calls it CRAFT – can’t remember a fucking thing.

Because of these factors, I am legally disabled. Work is hard. Complex assignments are too hard to process. Simple assignments bore the crap out of me.  I can’t work too much because Medicaid and my body won’t let me.  So I have been a caregiver for numerous years. I started off as a Business Management Consultant with clients all over the country.  Quite the let-down.

I am a mother of two twenty somethings 3,000 miles away from me and happy that way. They are living their lives well and that is the most any mother could ask.  But I live near my sisters and my 8 year old nieces are my delight.

Oh yes,  I am a recovering drug and alcohol addict – and food.  I have been sober from alcohol for more than 35 years with a 5 year break for a 5 year addiction to prescription pain killers which ended 11 years ago and had a horrible effect of my kids, especially my daughter. So there’s guilt and shame I can’t seem to let go of.

AND – I’ve wanted to be a writer  and missionary all my life.  I’ve been published a few times and I have an opportunity to go on a mission in 2017.  Until then I do what I can here.  I write a lot of poetry, some memoir pieces, and non-fiction articles  about women who have achieved greatness through tremendous adversity.  I write about what I know and want to know; what is inspirational to me and religion and spirituality.

So if you can find a target audience in all that, except that I probably sound very self-involved . . . playing with my navel and all that; let me know. And I still have to figure out pages, widgets, you name it.  Learning to be a good blogger is taking a long time . . . did I tell you about my TBI?

I welcome tips and comments.  I truly want to grow. So give me a hand why dontcha’.

 

 

My enemy . . . Myself

 

Gears grinding ever slower
Gummed up by old oil
Smoke coming out of ears
As thought winds down.

I’m not a good friend to myself
Once was –
But the shifting trajectories
Confused my mind

Staring at the computer again
And again
No semblance of brainpower
No manifest of concise thoughts

I’m losing myself
That part I valued most
Wisps lifting and flying away
Moths banging against outside lights 

When did poison leech
Synapses, nerve conduits
Knots grown in density
Fog rolling in

Sorry.
For the drugs
And illnesses born
For the wasting away
Of what was God’s for taking 

Sorry for me being me
For the hours upon hours spent looking
Misunderstanding the simplest connections
Snow on the screen of my mind

All verbiage is gone.
I am no longer the girl
brightest at work, in college,
Computer not a handy tool

Father died from complications
Born from dementia
Is this my genetic influence?
Of which I have no control?

I stare at the computer
Mind numb, an enemy of myself
Lost – beating my head against walls
Alone – no longer hearing myself think.