Healthcare Helland

Revelations of a Compelled Black Woman

JB WinSi

U.S. $XX.XX

BIOGRAPHY/AUTOBIOGRAPHY/MEMOIR

JB WinSi’s life has been lled with love and loss, joy and sorrow, vitality and sickness, and triumph and challenge. In fact, she has so many stories to tell, she couldn’t choose just one.

That’s why she wrote two.

Healthcare Hell invites readers within the nightmare she faced as a patient and caregiver, and her Revelations of a Compelled Black Woman brings you inside her dreams of a better life.

The American healthcare system is broken. Too many are trapped without affordable, accessible, or even acceptable care. Healthcare Hell explores the tragedies and triumphs of those placed under the healthcare scalpel. JB’s love for humanity drew her to work at hospice, where she had a front-row seat to the end-of-life journey and the ways the system failed its patients when they most needed it. And it was her love of justice that inspired her to share her thoughts on a system that needs its own miracle cure.

At the many intersections of her life, she’s embarked on more than her share of emotional odysseys. In her more re ective Revelations of a Compelled Black Woman, she shares some of her life’s most engaging, disturbing, amusing, and thought-provoking experiences. An award-winning community advocate, she served her fellow man as a volunteer, public speaker, and ordained minister.

Despite it all, JB clings to a rock-solid faith that there are still miracles waiting for those who believe. Take heart. Your dreams are calling you forward!

JB WinSI is a public speaker, mentor, and adviser with degrees in theology, business administration, computer information, and human resource management. JB has two adult children, two grandsons, and two grand-dogs. She lives in the Carolinas, where she enjoys relaxing, reading, listening to classical music, and composing.

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ANDREVELATIONS OF A COMPELLED

BLACK WOMAN

HEALTHCARE HELLHEALTHCARE HELL

HEALTHCARE HELL AND REVELATIONS OF A COMPELLED BLACK WOMAN

Copyright © 2014 JB WinSi.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. �e views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by �inkstock are models, and such images are being used for illustrative purposes only.Certain stock imagery © �inkstock.

ISBN: 978-1-4917-4021-7 (sc)ISBN: 978-1-4917-4020-0 (e)

Library of Congress Control Number: 2014913110

Printed in the United States of America.

iUniverse rev. date: 09/16/2014

Contents

Preface ................................................................................................ viiIntroduction ......................................................................................... ix

Part OneOne Between the Years ............................................................ 3Two Can anything good come out of Hospice? ......................11�ree Healthcare Dis-Ease ...................................................... 22Four A Time to Shift Changing Gears towards Success ......... 38Five Uninsured and Unemployed:

Black American Profile Double Whammy ..................... 44

Part TwoRevelations Of A Compelled Black Woman ...................................57

Six Para-Time Shift: A Dream Yet Unfulfilled Repositioning for the Future .......................................... 59

Seven Reality �e Long Black Mile ......................................... 63Eight Law and Justice on the Rocks ........................................ 68Nine Past �e Past: �e Triangle ............................................ 70Ten Revelations of a Compelled Black Woman:

�e Agony and the Ecstasy ............................................ 84

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Preface

My desire to write a book spans back for as long as I can remember. I intended to write one book but the end resulted in a compilation of two. Personal healthcare challenges, along with those of friends and family, but ultimately, many years of Ministry, my love for humanity and tenure at a Hospice gave me a front row seat to the good, bad, and the ugly in Hospice and Healthcare, while seeing patients and later during Outreach. My pursuits spanned the Urban, Hispanic, and forgotten Pilipino communities. All were underserved and underrepresented. I built many memorable relationships and loved on the Elderly. I was called a Community Champion and received many awards for my diligence, in addition to speaking engagements at Colleges and Universities, and taught as an Adjunct Instructor, Advisor and Mentor. �ese times also included almost two decades of Licensed Ministry where I was initially Ordained in 1994 as a Reverend, then later Ordained as a Minister in a second Ministry where I spent twelve years, and finally I transitioned to a third Ministry where I was Ordained as an Elder. Birthed out of those ashes were the memoirs I later penned as Healthcare Hell and many of my other reflective and dynamic Revelations. Hopefully, the reading of my books will leave you informed, inspired, and encouraged -enough- to pass it on in the spirit that it was written.

I especially dedicate this book to all of those that stood by the sidelines of life and saw my struggles, prayed, cheered, and continued to love, encourage, and believe in me.

To my son and daughter – you’ve made me proud to be a mother and a grandmother. To my grandsons M & E the sky is the limit! You can do it!

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Introduction

�e U.S. Department of Health & Human Services released some revealing research on the subject of Health and Healthcare Disparities. According to their study, the United States spends more than any other nation in the world on health care – in 2010 we spent $2.6 trillion. Despite consistent increase in spending, improved living standards, better technology, and higher incomes in recent years, health disparities among demographic groups remain persistently stubborn. Low-income Americans and racial and ethnic minorities continue to have significantly poorer health than whites and experience disproportionately higher rates of disease, fewer treatment options, and reduced access to care. Minorities also tend to receive less frequent medical and dental care, as well as poorer quality care even when controlling for income and education. Black Americans for example, experience more than double infant mortality rate, have 30 percent higher death rate for all cancers, are six times more likely to die from homicide, and are seven times more likely to die from HIV/AIDS. �e US Census Bureau reports that the Hispanic population has increased nearly 43 percent since 2000 and growing becoming the national majority minority at 50.5 million. Yet, like Black Americans, they remain the most at risk for chronic diseases such as diabetes, hypertension, and high cholesterol, along with Alzheimer’s disease, a memory disorder, either moderately or severely, account for 20 percent of new tuberculosis, and have much higher rates of obesity. Pretty alarming! Other studies show that we’re living longer. By 2035, minorities will make up 50 percent of the U.S. By the year 2050, over one million Black Americans will be over the age of 100. �at’s substantial!

In spite of unemployment showing signs of decreasing, the disparities already apparent among these groups will continue to increase. It is vital that healthcare reform reduce the costs to make health care affordable; protects a patient’s choice of doctors, hospitals, and insurance plans; invest in prevention and wellness; and assures quality, affordable health care for all Americans.

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More significantly, four in 10 low-income Americans do not have health insurance, and half of the nearly 49.9 million uninsured people in the United States are poor and unemployed. About one-third of the uninsured have a chronic disease, and they are six times less likely to receive care for a health problem than the insured. In contrast, 94 percent of upper-income Americans have health insurance.

Good deaths do not happen enough for Black Americans. �e number one killer is heart disease with lung cancer taking second place as the most

common cause of death according to studies published in �e New England Journal of Medicine. Additionally, suffering is greater for Black Americans and Minorities due to a lack of pain management, patterns of discrimination, where many Black Americans and Minorities, the poor, including the elderly, receive less optimal care and have worse outcomes, than care available to whites. �is further contributes to their “fear bank” of being cutoff for lack of money or insurance.

It’s been said that self-preservation is the first law of nature. �ese sentiments gave way to historical “de ja vu” where some Black Americans and Minorities believed that the dominant forces in life represented power or the powerless and are retaliating by “going down fighting” breeding more violence and senseless killings. �is is not to be confused with the “good fight” which exemplifies the role of faith and the Church. For many Black Americans and Minorities this behavior reflected dignity and nobility. �e evidence of this can be found in the history of Black Americans and some Minorities in this country as one of fighting against limitations and for freedoms. Herein lies some of the keys to the beginning of wisdom in understanding the fear and resistance on the part of some Black Americans and Minorities towards Hospice and end of life care leaving Palliative Care (Comfort Care) misunderstood and also underutilized.

Going forward, what are the real answers to all of the deep plunging and ever present social dilemma’s that seem to barricade the way to resolutions that defy what we know and see? Will Healthcare Reform and Economy ever “kiss” lavish in agreement and consensus and finally embrace each other?

In the midst of plummeting mixed economic news, runaway spending, deficits, and debt, taxes, and more taxes, I hear the sound of an eerie echo utterly resounding the tune of suppression, repression, depression, charged now into a time of expression, by everyone from Senate to Congress, from the Black house to the poor house, our cups are running

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over with circumstances that are compelling enough to be viewed as “just beyond impossible,” without Faith, way past daunting with “apocalyptic” predictions. Time is most assuredly of the essence and the economic day is well spent.

A Kansas City Star commentator made it plain when she said, “When you put the cart before the horse, no matter how many times you lash the beast, you won’t get far. Sooner or later, you realize the direction needs to be changed, not necessarily the animal.”

3

One

Between the Years

My step daddy, Jay, was born back in 1922 in a small town in Arkansas called Waldo. I never knew my biological father who, I later found out, had died when I was two years old. Sometime later, Jay moved to Camden, Arkansas. �e smell of that old paper mill was a familiar landmark even before you reached Camden. Papa and Bella his parents, were married in 1909 and lived in separate houses for as long as I knew them. I soon learned why. Papa was a staunch animated Holy Ghost filled Deacon back then. I never understood that other tongue talking he used to do sometimes when he had been preaching. He knew how to sing and dance too. �e seeing was funny although we weren’t allowed to laugh but I did anyway when I thought no one was looking. When he wasn’t preaching and praying, singing, and dancing for us, meaning my sisters and I, who were the only ones that ever came to his Church, except Caroline who played the piano that badly needed tuning or either she did. Anyway, outside of Church Papa was pretty nice although he didn’t talk much. He was tall and light brown skinned, the color or coffee with creamer. His bushy eyebrows and slow smile made him good-looking and pleasing to the eyes. Grandma Bella, on the other hand, was very short, stout, and generally dressed rather dowdily being susceptible to drafts, always having a great many scarves and shawls trailing about her person. She was obnoxious, to a fault, but mostly just plain old sour and cantankerous. Even back then, her hair was already graying with one long braid down her back. For all her so called churching, she rarely smiled or went to Church. Her countenance always appeared sober and dry. She had the annoying habit of clucking and smacking her lips in disgust, with both hands clasped behind her back, at what seemed like everything. We, my sisters and I, believed that she was the grouchiest and curmudgeonliest of her kind. By design, she had a very strategic way of making our visits to see her, against our will, agonizing and a living hell. Perhaps it was because she never liked mama, who she treated very

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badly, and made her cry most of the time. We thought her to be a mean old pinch-mouthed woman who delighted in tormenting all of us. Daddy always pretended not to see this but we knew better.

During one of these unwanted visits mama begged off miserably and stayed home. Had she known that Grandma Bella would be exceptionally moody and mean? We rarely saw Papa and this day was no exception. It was late in the evening and hot when two of my other sisters and I went outside to sit on the porch. �ere was and old “Juke Joint” as it was called back then, a popular nightspot, probably because it was the only one in town, right across the street. �e music was loud and lively with people all dressed up coming and going and drinking as laughter blasted forth from every throat. It was like a picture show that we found fascinating. We wanted to see everything. �is was a rarity that we took full advantage of. I can’t be sure how much time went by but once it had become really dark Grandma Bella called my other two sisters in but allowed me to stay out on the porch alone. At least I thought I was alone. As time passed, I became hot, hungry, and sweaty. I decided that I wanted to go inside. I got up to go in and discovered that the door was locked. I pounded and pounded but no one came to let me in. So, I pounded and kicked again and called out to Grandma Bella and my sisters. Still no one came. Where was everyone? Perhaps they couldn’t hear me so I pounded harder. �e thought fleetingly came to me to use one of the other doors. But we weren’t allowed to use the other entrances. I noticed that some of the people across the street at the Juke Joint had started to stare. I didn’t care. I was totally drenched in sweat and afraid by now. Suddenly, something bit me, again, and again, again and again. �ere were more of them stinging, burning, and biting, in my face, my arms, legs, and neck. �ey were galanippers: A large giant mosquito, a vicious predator, and dawn to dusk feeders, bloodsuckers that carry life-threatening diseases. �eir keen sense of smell was triggered by the sweet smell of my perspiration. I had become their “blood meal” a human target. I tried to fight them off. I kicked and swatted at them. �ere were too many. I was on the brink of hysteria as I continued to scream and kick on the front door. I saw the curtain on the door move. I knew that it was Grandma Bella. My throat was too parched and dry to cry out but still I tried. I must have fainted then. When I woke up, I found the front door unlocked and went in. �e house was quiet and everyone was asleep. I felt alone and abandoned. Burning to exhaustion and swollen, I took solace in a disturbed sleep.

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�e next morning I had a terrible headache and was nauseous. I stumbled out of bed confused and groggy and lost the remains of my last meal on the floor before I reached the chamber pot. Visible, irritating bites covered most of my body especially my legs. Out of fear, I didn’t dare ask Grandma Bella for help. I was sure that she knew what had happened to me. Perhaps, she had even played a twisted part in it if only indirectly. I found some alcohol, by sheer luck, and used it. I also found Grandma Bella in the back yard with my sisters. It appeared that she was getting ready to wash my youngest sister’s hair with the lye soap that she made and kept readily on hand. Stunned beyond belief, I watched as she washed her hair over and over again as my sister screamed helplessly. Glued to the spot, I could do nothing even as pride rose on a gust of hostility as I continued to look. By the time daddy came back to get us, all of my sisters long, beautiful thick hair was gone. Left behind, were stubby chunks of hair and huge ball spots. Since my mosquito bites had gone unattended, except for the alcohol that I continued to use until it was gone, I had developed a delayed hypersensitivity reaction to the mosquito bites. �e visible irritating bites had become large swollen pus oozing smelly mounds. Unknowing to me, this was an indication of infection and was very painful. Petrified into silence, I said nothing. During the long ride home tense silence seemed to crawl in and hitch a ride with us.

Nothing could have prepared me for the look on mama’s face when we finally arrived home disheveled and battered. Immediately beckoning my attention was the sound that I heard next. It was the sound of a wounded animal caught helplessly in a trap. It was the sound of a pain so deep it cut quickly to the marrow. Time eclipsed inside my soul and propelled me back to the moment. Silence screamed her displeasure. Daddy walked out. We were left crying with mama.

Many effective home remedies existed, during this time, including calamine lotion and vinegar. Mama used them all and also made a paste out of some type of concoction and covered my body with it. Too late, the dye had been cast. �e itching and the scratching prepared the way for large scaly sores that when healed left unseemly large round black circles marking the territory of where they once lived. Only time would repair the damage done to my sister’s head of hair. What would repair the damage done to our spirits?

We never spoke of those times except when we were all alone. As we grew older, the cotton fields and going back to Camden became the choice

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between the lesser of the two evils. Unanimously, the cotton fields won out. Less I forget those horrid times, I only have to look at the ugly scars left behind on my legs that serve as a constant reminder of times gone but not entirely forgotten.

One day sometimes later we were told that Grandma Bella had taken ill. It was unclear what her ailment was. She stayed this way for sometime, suffering, in pain and agony. Had I been a vindictive person, this would have given me great consolation for the much evil and pain that she had caused in my life alone. However, the truth of the mater is that, sometimes we journal our own ending by the life we live. Truth to tell, we reap what we sew. Unexpectedly during this time, Papa died peacefully on October 14, 1963.

Daddy was a proud and simple, hardworking man, yet pious and harsh. Although he truly believed that you could achieve anything you wanted providing you were willing to sacrifice and work hard for it. His adage was, “I don’t want nobody to give me nothing. “Open up the door and I’ll get it myself.” (James Brown) To that end, he worked day and night to put food on the table, tirelessly trying to improve his lot in life, even if it meant neglecting his family. He looked so much like Papa. However, in reality, there was no comparison. On August 8, 1979, daddy was seriously injured when a car struck him as he was working on his job for the Water Department. He underwent surgery on his legs as the results of being pinned between the car that struck him and a Water Department pickup. With its lights flashing and an amber beacon light on top flashing, daddy was working behind the truck. It was little consolation later, when Mrs. Jones was charged with driving while intoxicated on drugs and recklessness. To make matters worst, one leg had to be amputated after gangrene had set in. Being an active man, enjoying his deer and pheasant hunting, and other activities, daddy never recovered from this horror. His anger and bitterness eventually consumed him. Grandma Bella died on April 2, 1982, almost two decades after Papa. As far as we knew, she had died without a word of love or farewell. When we finally got word that she was gone we prepared for the trip to Camden for the funeral. Even so, there was no way to know what daddy was feeling. Whatever it was, he took much comfort in “Jack Daniels” which became a very present help in the time of his troubles.

It was a dreary eerie day when we finally arrived in Camden. Reflecting back now, I remember the uncanny, unnerving, cold, feeling of fear.

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Where was this coming from? When we pulled up to daddy’s brothers house, stony faced and unsmiling, he came out to the car to meet us as we unloaded. Anxiety rode on his shoulders. Grandma Bella was indeed dead and buried over a week ago he told us. Like a dam breaking, the news shattered our composure. A hot moist breeze blew out of nowhere stirring the leaves in the trees. �e disturbing whiff of the stench of that old paper mill became overwhelming as a loud whistle blew from somewhere in the distance. �e only other sound was that of my breathing as my heart galloped at record speed. �e air seemed to rush out of my lungs. In the abstract detached manner of one living a nightmare, I stole a look at daddy. Two deep lines dug their furrows between his brows. For a moment, he was like the dead after rigor mortis has set in, still, void, unmoving. �en suddenly, he transformed into the likes of a mad dog after a severe onset of rabies. He snapped, salivating, as he lunged out at his brother. He had gained in contempt what he had lost in gullibility. He was the incarnation of pure rage. Anticipating this, uncle had backup inside the house and they intervened quickly. Much later, we learned that another brother had done the dastardly deed of burying Grandma Bella incognito. Perhaps we would never learn how he had pulled it all off without his other siblings knowing. Who else had known? We made ourselves scare and went to another relative’s house for sanctuary. �is unspeakable evil was birthed out of the hatred and jealousy between two brothers. �is was Cain and Abel taken to another level. �e next day daddy revealed his decision. He had decided to do the unthinkable. He wanted to have the body exhumed and have a ceremony. Crestfallen, mama tried desperately to change his mind. How do you reason with madness? Afterwards, we did not see either of them until two days later. When they eventually turned up again we were told to get ready to go home. We had learned early that we did not ever buck daddy’s authority, or ask questions, without severe consequences. Grandma Bella had taught him well. So as quiet as church mouse, we made the journey home. After that, I never saw Camden again.

In 1973, six years before daddy’s accident, mama became President of a branch of the NAACP, in the city where she lives, at the age of 45. Not yielding, by 1981 at the age of 51, ten children later, she was known as “a force to be reckoned with” inside and out of the community. �is proud black woman speaking with her expressive face alive with passion was pregnant this time with purpose. Under Mama’s leadership, back then, the NAACP was urgent, vigorous, effective, and intentional in their efforts of