Category Archives: The World at Large

The Other Woman

Every night I pray for her.
In my mind’s eye
I so clearly see her.
My platitudes ill advised,
meaningless . . .

How can I justify our God’s plan?
Why should I be free of need
and she have anything but?

I know it’s stereotyping
but her swollen belly children
deserve an accounting.

Soon she will be gone –
disease stealing her strength away.
They will be orphans -alone –
under a tattered canopy,
thrust into begging to survive.

Just one more parent gone,
one more family destroyed
one more ten year old
parenting a large brood
under the blazing sun.

Why she – why me –
I who have nothing to give,
intimately knows every wrinkle
worn of care . . .

But I am here
babbling words to our Father
as she dies bit by bit
under the African sun
in a refugee camp
alone . . .

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.

Social Security Disability – Living in the System, or not

How many of us live terrified about money?  Not understanding it. Not knowing how to utilize it productively. Money is a vague anomaly, something that, for some, is easily quantifiable, for others a mind spinning process that brings little comfort, little stability.

I look at numbers and my head spins. That portion of my brain which controls numbers has permanently gone on vacation.  Has always been basking in the suns of Antarctica.  My father used to help me with math homework until “Modern Math” was established.  He bought a book on the subject and I remember nights when both of us would be crying trying to figure it out.

When I was a Paraprofessional in the schools, kids in grades 4 and 5 quickly learned to go to someone else for help.  If they needed to write, do geography, jump through hoops, learn history, read, they knew to search me out.  Math?   Computers they taught me. Why get things marked wrong when help had been asked for?

I have always found myself in trouble with my finances.  This year I am facing problems way beyond my abilities.  I was on Social Security Disability, very deservedly so. I was not one of those milking the system . . . I am someone who doesn’t understand the system. Never good in Math, Traumatic Brain Injury made it even worse.

I work as a caregiver/CNA.  Some cases are paid out of pocket, some as an employee, others as an independent contractor. Trouble is, how do you keep course over a year, month by month, week by week, what is too much or not?  How do you tell a client you can’t work for them anymore because you just discovered they are going to start paying by another format?  How do you handle it when someone, in June, decided to pay out of pocket but in January, determined a 1099 would be more to their keeping?  It isn’t a fair system. I know, I know, who said it had to be fair?

I don’t have the ability to work 40 hour weeks, if you can find a job that gives you that. Even 20 hours can, many times prove more than I am capable of. I am in a great deal of pain on a constant basis. I need the benefits offered to the disabled – the medical benefits.  I don’t abuse the system. I don’t use Food Stamps or other benefits because I pay for them myself.  I need Medical Benefits and to qualify for Social Security. I’ve never filed for unemployment benefits or welfare.  If only Social Security helped you understand the process and then, if needed, provide the help necessary to comply with in the system.  The system would be so much more organized and understandable then.

I contributed to the system for many years.  To go from being a national Business Management Consultant in Human Resources and Management Development to someone on Social Security over the course of a working timespan is humbling. What many don’t understand is, the vast majority of the working disabled are trying the best they can.  But they are in a system that penalizes you if you work even slightly over the set limit.  Problem is, you don’t know in the beginning of the year what your earnings will be, or maybe in what form as in my case.

So now I am not on Social Security. I need to apply for re-establishment which can take 3 years if granted at all. To obtain it I need to work less or not at all.  If I work not at all, not having Social Security, I can’t pay my bills or eat.  My family is talking about taking me in to their homes. I’m 60 for God’s sake!!  As much as I love them, I don’t want to live with them any more than they want me.  This is the American culture where each generation provides for itself and lives separate from the others.  It would be one thing if we did things the natural way and lived multi-generationally but we are not, and don’t have that thinking pattern.  I have lived by myself for almost 20 years.

So tough choices all around.  Happy New Year! (and I still don’t understand the system)

 

 

 

Muttered Musings

Another day
God, help me make it through
have no one hit me today
let there be a cease fire between
relatives, families, friends,
countries . . .
I can’t keep living with
this hole in my heart.

Let this day be about blessings
make the whole world stop
and pray an hour, a day, for
refugees, Aleppo, child brides ,
untouchables.
the battered and beaten,
defeated and aching
sick -mentally, physically,
emotionally, especially spiritually.

In the busyness of the day
let all peoples remember
this is not just about them
there is something greater –
feel awe, revel in gloriousness,

Not gonna happen anyway
World’s too crazy for Peace
Too many BAD people –
in homes, communities,
We deserve better
Tired of waking with chest pains
second guessing God
being scared . . .
why are so many people
so Stupid!!
My prayers go unanswered,
God looking down and shaking her head

 

 

 

The world is crying

There is so much pain in this world.  It seems to be screeching out at us.  Not sorrow, although that is there, but abject misery.  We may think our little lives are painful but when I think of the refugees, the millions of people in refugee (internment) camps, those who have nothing to eat, no shelter, lacking clean water, caught in the crossfire of crazed beings fighting over bombed out towns which lack every necessity now, children raped, stolen, trained into soldiers, deliberating drugged to make them more obedient, who are we to say our pain is great?

It is real, and exceedingly hard to climb out of, but my pain is increased by the pain of this world.  It’s crying out, in the air we breathe, in each time I put food in my mouth or walk into my comfortable, safe apartment.  I may be disabled, living on Social Security, and facing real challenges, but can you imagine being disabled – mentally, emotionally, physically, And being a refugee?  Can you imagine being on a boat with so many people it is impossible to move, not knowing when, or even if, a country will take us or if we will capsize the boat and drown?  That is fear.  That is feeling voiceless, unwanted, without shelter or food, not knowing how to care for your children in a situation like this, totally alone in the midst of many.

I hear and feel the ground beneath me aching in sorrow.  I feel the air I breathe trembling in agony.  There is only so much pain this Earth can withstand and in these times, it feels like it can’t possibly take anymore.  For we can’t forget, this world is an organism in its own right.  Can you imagine how It feels being bombed, desecrated, stripped of its beauty, groaning under the strain of having to hold the burdens of the multitudes? Sometimes I feel I should sit down on the ground and stroke it, soothe It’s burden even a little.

And mostly, I don’t know what to do.  Where I can place my small sums of money that will make a meaningful difference and not swallowed in “administrative fees”. Can I make a difference and where? If I could jump on a plane and fly to those crying in the wilderness, what could I bring but a hug, an ear to listen (if I understand the language).  But even that is not a reality. I need to look for people and places nearby. Stretch out a hand where it can actually be grabbed.  Help. And I need direction about where to do the most good, any good, rather than retreat into my tiny world of cat, books and home.  How is an activist born?

Shadow of Death

As I walk through the valley
of the shadow of death
what evil is there to fear?
‘Tis but colored air
to be changed with the sun’s rising.
Or . . . .

Creatures beneath the bed,
come to snatch the hands,
of little girls who carelessly
abandon them to the bed’s side
under cover of night.

The horrific rapist
who takes our precious trust
as he spills his seminal fluids
into his chosen receptacle.Or those
who repeat the acts over and over
to their children or others
.

The inquisitionist sharpening
his emotional knives to extract just
that bit of information more
to make his twisted imaginings
a reality even though drawn from one
who would do anything, say anything,
to make the pain stop.

For few horrors  are more potent,
then those stored in genetic memory,
merged with the weighting our days,
that enable a mind to envision
a nuclear bomb as an answer.
A politician who’s popularity is
dented by the evil coming from his lips.

Virus codes which can infect pain and death
on select populations while avoiding others,
leaving them intact, fostering legacies of discontent,
of narrow-minded bigotry and racism.

Of an exhausted, drained mother
who looks with love at her young children,
giving them everything she possesses within
for the nourishment of their souls,
while shattering her mirror
so she won’t be forced
to see her own reflection –
who has never been able to grasp
how to love herself, forgive herself,
nurture herself . . .
for doing nothing more than breathing.

How else could she walk
through the valley of the shadow of death
unless those shadows
were the echoes of her soul,
the holes in her true being,
the gaps between reason and understanding.

Down to the very acceptance of fear’s worth,
the acknowledgement of fear
as a long-time companion, and as such,
a dear friend.

As she rocks her children to sleep,
praying for their safe passage.
through their valley of shadow
to the coming of the light.

Not living the Dutch way with sex

I was just reading in motherwellmag.com, an article written by Peggy Orenstein, October 10,2016, about the substantive differences between the Dutch way of handling teenage sex and that of America’s.  The repercussions felt by the two were impressive. And got me thinking about my own experiences, other articles and popular fiction.  I have to hand it to the Dutch, they have their ducks in a row, in a number of ways.

This world has so many cultures. In some a girl who has had sex, even by rape, is stoned until death. Others consider her disgraced or ostracize her.There are many who marry of their children at horribly young ages with pregnancies common as low as  twelve.

The Dutch saw the free, casual sex trend of the 70’s had found a different way to face the issue head-on. The government, schools, community leaders, and families worked together to talk and treat sex as an opportunity to educate young people  about love, sex, protection and commitment.  Judgements are few. As a reult, children understand the preciousness of sex and wait until they are in committed relationships where both partners share the responsibilities for protection and there is not pressure from peers and pregnancy and underage sex rates are much lower than ours.

When I was a teenager in the early 70’s (yes – I can remember that far back), sex was still hidden unless you were in the boy’s locker room.  We drank and smoked pot a lot, so inhibitions were lower.  It hasn’t changed much as I can see, except the drugs are worse and inhibitions lower still.  I didn’t know if even my best friends were having intercourse or not in high school. I read girls have clubs about shaving below, how many they’ve scored and what variety.  I did everything but the final home run but with a bunch of partners. Hell, I was a minister’s daughter – I had a reputation to consider!

My parents found out I had succumbed to my baser instincts when I called my mother from college and described my symptoms and asked what it was (she was a nurse and therefore god). Her answer was “So you’ve started having sex?”. I was floored.  She went on to tell me I had a UTI and it was called Honeymoonitis  by medical people as it so often happened on honeymoons, caused by intercourse.  She then told me to go to a doctor for help, to make sure we were both clean when we were having sex, and, for God’s sake, use protection.  So much for the Sex Talk.

Oh, there was an earlier sex talk.  One day, on the Football bus, a boy cried out, “Debbie, I had a wet dream about you last night!” I was mortified.  After I arrived home I asked my parents what one was.  They sort of described it.  I mumbled okay and left.  A few minutes later my mother entered my room to ask if I had had one.  (which only confused me more) and I explained what had happened. She said “”OK”.

Sex education involved a banana and anatomically appropriate charts (desexualized). My daughter’s involved carrying an egg around, splitting the responsibilities with her partner, to approximate what having a baby would be like. I would have stuck the egg in the refrigerator and pulled it out Monday morning.

A decade later, books speak of highly charged sexual episodes – and these aren’t the heaving bosom romance books but ten top NY Times books. And judging from them, we have mucked it up more as the years go by.  Do parents give any advice at all?  Do they talk about waiting until one is in a deeply committed, loving relationship? Do they have a clue what is going on?

The Dutch still have a lot they could teach us.

 

 

 

 

Schoolroom Teachings

With sure lipped bravado
he jet-sends his jeers
to ears waiting, knowing
expecting those words to come,
a fine dance of discontent
within the classroom walls.

Listless teacher, burned out
from too man kids and too many years
crying out for silence
to deaf ears, churning minds,
squirming bodies.  A Saint
might be able to achieve, but
one who hides beneath cover
of smile, whose eyes reflect out,
carrying no inner workings
the poor children carry the
hidden legacy of a broken system.

To look at the children,
the ones who care, yet are not
closed to the outer world,
their bodies retreat into themselves
curled up in a concave impression
of distancing, of
protecting the heart and mind,
placing all extremities out front,
to give the illusion of active attention,
so a measure of safety is gained.
Their eyes wells of sadness.

We witness in silent horror
as our children slowly
are divested of their gifts,
stripped bare of courage and strength,
rendered helpless in the feudal system,
where teachers are all powerful rulers,
infesting the masses with
their brand of corruption.

And, in the corner
facing a stark wall,
eyes turned away from the maelstrom
a boy draws mazes,
over and over again,
seeking his way out.

 

Caregiving challenges

His face a maze of rivulets and ravines, crutches help bear the weight he carries,
his feet heavy, movements ponderous. Yes, age has wormed its way into his bones
but more, he carries the years upon years of caring for a willful, capricious wife –
most times removed, caught up in her own world, with people and presences
no one else can share or know, leaving him alone with the battle of care.

Caregivers have a heavy burden even with the easiest people those with minds still clear, bodies more or less functional. Whose age or disease make the need for care, daily or occasionally, a burden, willing or not.

But for others, caregiving  carries a much different burden. When they must manage a violent or mentally challenged person, a person with bipolar or schizophrenic
episodes, one whose body has worn out, needing total care, it can make the caregiver
sicker than the person cared for.

That old man has cared for his wife since she had nervous breakdowns forty years prior, sitting by her bed every minute, ignoring all else, including his only son, alone, left to fend for himself, do the shopping, laundry, cleaning.

He has abided her demands, given into whims, defended her right to choose not to medicate. In so doing, she has chosen a tangled trail leaving her family to carry a hard burden of care allowing the right of self-choice to medicate and feel largely better or be “in control” of herself as she berates, hits, babbles, ignores him or
or talks gibberish. BUT always remains the center of attention.

The burden of caregivers is their lives aren’t their own, at the least for sizable chunks of time.  From bill paying and shopping, to bathing, feeding and all facets of self care,
they spend from Sunday visits to constant care for family or hired professionals.

When it comes to Alzheimer’s, all bets are off. You are not often recognized for yourself. Hitting, endless paranoid pacing, constant distraction, inability to  voice thoughts coherently . . .it is exhausting. But it is also a means to give back, to make amends, to relish the moments you have because they may not be long.

That old man now must also contend with a son who believes his mother has every right to choose not to medicate, even though all who are part of her life are negatively affected by that choice. The son refuses to listen to his own children who have enough detachment to see the situation more clearly.

When the Father is overwhelmed, the son brings her, 600 miles away, to his home
where she sits alone, hour after hour, or wanders off with the dog, lost, unaware of where she is or why others are yelling at her to get off the street. It’s not care, not a solution, it’s an ill-chosen stop-gap measure that could hurt or kill her.

We need to be aware of the long-term effects of the decisions we make for our loved ones or those under our care. Sometimes the right solution is personal care by the family, sometimes it’s professional care within the home, but assisted living or skilled nursing homes may be the best options too.  Money is, of course, a vital component in decision-making, as is insurance coverage, and what the impact will mentally have for the person being cared for.

The Right To Choose Suicide

THE RIGHT TO CHOOSE SUICIDE

Suicide evokes such a rash of feelings and jumble of thoughts in me. Nothing is easy in this arena. I have always been a firm believer in a person’s right to choose the time of their death, and in the past couple of years, I have been examining those values as my personal health issues have made me increasingly aware of my mortality.

When I was in college, my parents owned a residential home for the elderly. One of the women in the home, Marjorie, was a quiet woman, someone who held her own counsel. She shared the bedroom with another woman and we rarely heard her speak. It wasn’t that she was shy necessarily; just that she had an economy of language. She had been in the home for several years when she found out she had inherited a disease from her mother. The disease caused a slow and very painful death. Marjorie refused to accept those terms. She waited until she had a full prescription of her sleeping medication. During the two days before, she quietly went to each person in the home and let them know how much they meant to her. Then, she swallowed the entire bottle. When we woke the next morning she was gone, but she looked peaceful and had the trace of a smile on her face. We all respected her decision.

I fear I may develop dementia as my father had. I have no qualms about choosing to end my life before it gets too bad or I become a burden to my family. My children have a right to their own lives and having worked in Memory Care units and private duty care of people in the early, mid, and late stages of dementia, I know I don’t want a life like that. It’s a very hard, often long, way to go. I want my family to know me in better ways even though, as my daughter said, God will not except me in Heaven. To which I replied – then I will fertilize flowers right down here.