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.

Climbing out of the Trough without going into Mania

For a couple of months I have been a bottom feeder, living in the Trough of Despair and Discontent. There are profound reasons . . . . I lost Social Security, need to find another car, am missing my children and having a hard time reaching out to others, had a major car accident and am afraid of myself behind the wheel, the list goes on. But I am trying to climb out of this pit of despair. Sometimes it works, for moments. But for now I have to content myself with baby steps.

It’s time for a transition to a more normal path. Much of that involves taking care of business. Pulling together the information necessary to Appeal to Social Security, looking for a car in the usual sources, making an appointment with an accountant so this doesn’t happen again, and being responsible. The last being a near impossibility. Lastly, adopting a more positive frame of reference.

In doing some reading I came across an article entitled “5 Positives of Living with Bipolar Disorder (Besides Creativity). Its suggestions made sense to me:

1. Bipolar “Gives you strength, tenacity, or “Chutzpah”.
2. “It makes you more proactive about your overall health” – In order to ensure you are not living too high on the hog or existing in the pig slops, you need to make sure your medications are in supply (and taken as prescribed) and not in conflict with each other. Exercise, sleep, diet, meditation, and practicing spirituality are all essential.
3. “It gives you empathy for other people” – being bipolar and living with its stigma and side effects can increase your empathy both for other bipolar people and for the general population. We know how feeling bad works and we can understand how hard it is for others.
4. “It helps you know who your real friends are” – I know I have people that love me. I also know that sometimes they just don’t get what’s wrong with me even though they love me. I can be a bitter pill to swallow. But there are a couple of others who understand or have the disease themselves.
5. “It gives you the ability to help others who have the disorder” – That’s the wonderful thing about Prime Time. It’s one for all and all for one. We try to be there to support each other.

The creativity factor can’t be ruled out either. According to some researchers, 30% of bipolar people are more creative than the regular population. This is often during Manic phases of the disease although some of my best poetry was written when I was in the trough. The trick is to avoid the suicidal side we can be subject to.

As Lynn Rae has said, “Focus on what you can do; not on what you have lost.” You will have a greater chance at happiness if you focus on your blessings instead of your heartbreaks.

The 5 positives were developed by the “Advice and Support Community:, a group of volunteers at the International Bipolar Foundation.

Shoveling the Crap

We all have experienced the tragedies, mania, depression and despair of this disease. Lately, I have been going through an extremely stressful time, regrettably of my own making. My mind is spinning like a top, panic attacks are frequent, almost daily. Depression is manifest, my sleeping patterns are erratic. More and more pressure and repercussions keep coming my way. And knowing I created this mess is truly devastating.

However, I have picked up the shovel and am slowly digging myself out. It is time I became a solidly responsible adult. I try to project an image of competency but it isn’t always working and I am so embarrassed that I don’t want to talk about it much. I don’t want to put the burden on others so I only share with a couple of people. But I am sharing and that counts for something.
Being in that pile of poop is truly a tough time but I am trying really hard to do certain things:

1. I take courage in the fact that more bipolar people are creative than those in the regular population.
2. One Step at a Time – I can only succeed that way. Whether my mind is spinning out of control, I can only move one step at a time and doing it that way begins to slow my mind down
3. Compartmentalize – realize I can only do so much, in a certain order, and each hillock on the pile can be addressed without destroying the whole
4. Be good to myself. Bubble baths, oil treatments, kombucha, a good meal I took the time to prepare . . .
5. If all else fails, and I am worn to the nubbins’, take a nap, recharge.
6. Share with someone – it really does lighten the load

I have the ability to slow the spin, it takes a lot of effort, and the help of other people, but that pile of poop can become manageable.

Fantasies of flavor and wisdom

As a child, I wanted more
than anything to spend the night within
the walls of an ice cream shop,
with lace covered dainty tables,
flowers everywhere,
one hundred tubs of
luscious, creamy, sweet savoring
goodness . . . and a big spoon.

I’d start wherever I wanted,
choosing the most interesting first
and go on from there,
until fully sated
with a morbidly swollen belly
and a huge smile.

As I grew older, the dream shifted
to that of being locked in at
the Library of Congress overnight.
Dusty books, new ones with shiny
covers and crisp spines. Documents
Histories, Bibles, books covering
every religion and school of philosophy

But I would head to the rare books –
the ones with pages so old they crackle,
don white gloves, and linger . . .
so much ancient wisdom
places and dreams I couldn’t
before imagine.
Ways of writing foreign to me
A world within a world.

It is there I would find succor,
sentient, satisfying completion. . .
until sated and then
entered the next room of desire.


Meal time on Memory
distant faces staring into
nothingness . . .
The feeders patiently shoveling
pureed fish or green beans
whatever the chef sees fit to send.

I look about me  and wonder
where these souls are
and where they are going.
Sometimes you see glimpses
of who they were
when choices could be made
and the treatment of life
was theirs to own.

And then I wonder –
are they going to heaven
or hell?

Unanswered prayers

So often God,

I begged, pleaded, cried,-
for men, money, success, fame
wanting so desperately
to know my purpose here
why I had to live through pain
ongoing medical and emotional
traumas – I prayed.

Time’s passed.
Dreams of long ago
are shadow figures now
and though my days are long
and my nights are shared
not with a man I prayed for
but a cat’s purr
I live with irony and resolve.

Younger years were the prevail
of two men who tore me,
split me into pieces and spit me out
bruised, battered, alone.
There were others for a time, but
all showed the true measure
of their worth far too soon.

It’s taken this long for me
to come to terms with my
inadequacies and limitations
who I am, what this skin
and my sin
have designed for me
there was no room for
more distractions

So when crisis or change winds blow
I pray for his wishes
Oh, I let Him know how I feel,
what I think and want
but I shut up and listen
and even if I don’t hear
I par for his will to come to pass
and know I don’t know the answers
or what’s best for me
or why I have spent so
many years alone –

Winter winds a blowin’

It’s 6 AM and I am not an early riser.  I’m more “The children were nestled all snug in their beds” but no dreams of sugar plums dance in my head.  Maybe that’s a good thing, I’d  likely gain weight just dreaming about them. But the gas fire is burning, there is the incessant running of little feet over my head, the coffee is brewing, and I want to write.

There’s a snowstorm coming today.  Supposedly another big one – 6 to 12″ – or so the climatologists are saying.  Well, some are saying one thing, others another, but the gist is we are getting the white stuff. None of my coats close as they should, buttons loose, button holes ripped, claspings don’t stay clasped. My sewing skills are sorely lacking.

We Northeasterners used to be a hardy lot, but we don’t get the kind of snow we vaguely remember.  Oh, there are a few that blow our way but there are days now in January and February when people are out jogging in their tight little outfits, midriffs showing, tee shirts abounding, and animals out of their eons old patterns.  I heard geese the other day and started begging them to turn around, it isn’t time yet.  Bears don’t hibernate the way they used to.  They are out perusing human leavings because there isn’t food to eat because their internal clocks are off.

I’m just as bad.  I had two accidents this winter.  One in a torrential  downpour, a mere fender tap but still, while the other driver and I were ok, a policeman showed up as we were leaving to give me a tough ticket. Then, three weeks ago, on a road I travel to work on, I went off the road, hit God knows what, sheared off my driver’s side rear view mirror as it scraped and banged up that entire side while taking off the right bumper and breaking the window washing system.  Needless to say, I’m looking for another car – scared I’ll repeat my actions on the next victim  and feeling oh, so sad I did this to my staunchly loyal little Hyandai Accent of 12 years.  It took me to California and up and down that state. And since I’m on Disability, I can’t afford much.  Anyone have a good car for under $2K?

So here I am, waiting for the snow to start and wondering if I dare go to church today.  We have quite an elderly population so church might end up closing for the day so no one suffers any falls.  We are also poor and small, we can’t afford any falls or accidents.  My rickety, screeching car maybe shouldn’t drive the 15 miles in the snow.

So, as my coffee cools, I will continue staring out the window waiting, and wondering what I should do. (Just got the call, church is cancelled for today, yippee! nothing to worry about now except finding a new car.




Whatever shall I write?

Deciding what to print is a tricky proposition.  What do others like?  And do I write to be read or to give voice to my feelings and thoughts?  What is honest writing?  I stumble along in my daily life, knowing I am living a far too simple one.  There is complexity and intensity in some ways but are they writable? A part of me wonders if I give voice to certain things will they be read by those who wish me ill?  And I hate how paranoid that makes me sound.  But I listen to the news and those people who say the government is sequestering everything for potential use, even by people who do no wrong. I’m a person who writes from the heart and is perhaps too self involved in my writing. I need to branch out more but am not sure my opinions matter in the grand scheme of things.  When I was writing love poems or ones about the ending of relationships, my ratings were high.  But I am long past that part of my life and believe there is still meaningfulness in what I write.  So I’m asking you, what is it you want to read?  What tickles your fancy?  What makes you sit up and wonder or imagine or conceive?  I’d truly like to know, especially if you have read my words in the past. Thanks.