Ten Days with Minor: An Unlikely Story of Love, Sex and the Beauty of Dying

By Nsedu B. Onyile

Ten Days With Minor is a story that draws us down the path that we would rather avoid: to deaths door. But what we usually greet with dark foreboding, Nsedu flips to the other side: to openness, intrigue, ancient overlays and new possibilities. With a fresh and vivid sensuality, she gently pokes, prods, and teases us past our own fears while giving us a precious window into the end stages of AIDS. Dancing between curiosity and suspense, this chance encounter of two people from very different cultures will shake your assumptions and feed your love of life even in the face of death. This bold and daring story will leave you quivering with aliveness.

• Language: English
• Publisher: AuthorHouse
• Release date: Apr 7, 2011
• ISBN: 9781456759858

Nsedu B. Onyile

Nsedu Bassey Onyile was born in Kaduna, Northern Nigeria, and raised in the city of Calabar in the South Eastern part of Nigeria. She is the youngest daughter of Chief Bassey Onyile and his wife Chief Mrs Ansa B. Onyile (J.P.). She received a Bachelors degree in Nigeria in English and Literary Studies and her Masters degree from George Mason University in Nursing Administration. Over ten years, she worked as a Correctional Officer for the D.C. government and now enjoys her daily experience as a trauma/emergent care nurse in Las Vegas. Ms. Onyile has contributed articles on cross cultural topics to a number of publications. This is her first book length work. It is deeply informed by her experience of the contrasts of West African and American society, and the compassion gained through years of caring for patients of every hue, culture and orientation. She is married with three grown children.

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© 2011 Nsedu B. Onyile. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

First published by AuthorHouse 4/5/2011

ISBN: 978-1-4567-5985-8 (e)

ISBN: 978-1-4567-5986-5 (sc)

Library of Congress Control Number: 2011904905

Printed in the United States of America

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

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. The 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.

Table of Contents

DAY ONE

DAY TWO

DAY THREE

DAY FOUR

DAY FIVE

DAY SIX

DAY SEVEN

DAY EIGHT

DAY NINE

DAY TEN

This book is dedicated to my husband and children. Our family lives by the saying If you love someone, set them free. I have been set free and completely loved at the same time. My husband, Ernest, is unconditional in his acceptance and support, bringing out the best in me.

My children, Ate, Koko and Angel would be any parents’ pride and joy! My son once said, We are all so stubborn! I see us stubbornly love, encourage and believe in each other.

It would be impossible to put this book together without my family understanding and respecting my needs. I dedicate this work to them while thinking of the Minors out there who have not experienced the love and support of a family, regardless of their differences.

Minor had noticed that he was feverish on a daily basis. His temperature remained high despite all his efforts. Ice bags under his arms and to his groin and Tylenol every four hours would not bring his temperature under a hundred and one. He had been advised to alternate Tylenol with Ibuprofen, which he did, and the temperature still remained high.

He also sweated a lot, especially at night. Finally, he called his doctor’s office and booked another home visit. For an astronomical fee, the doctor had been visiting him at home since he moved to his current house. Minor refused every procedure that required him to leave his home. Minor explained all his symptoms, including the ongoing poor appetite with nausea and vomiting, and the doctor asked him about coughing. Minor had been coughing for so long that he did not see it as a symptom anymore. He also informed the doctor that his sputum had blood streaks. The doctor promised to send the x-ray technician for a chest x-ray, the lab tech phlebotomist to draw blood and the nurse to test him for tuberculosis. Minor questioned the reasoning behind another chest x-ray. He felt he had enough chest x-rays already to last a lifetime. The doctor explained that he needed to check for any changes since the last one. This was agreed to by Minor though he knew within him that he was having his final contact with the medical world. He was not interested in any more interventions. There were no known procedures to reverse his end-stage AIDS status. He had concluded it would be easier to focus on death and dying instead of wasting money on false hopes.

Minor never appreciated the nurses and auxiliary health care workers who visited his house. He believed they could do without the multiple precautions. When he was going to the emergency rooms and doctors’ offices, he never noticed all the personnel in masks and goggles. His neighbors would think he had Ebola or SARS if they saw these bee keeper look-alike people with their masks, gowns and protective goggles entering and leaving his house. He respected their right to protect themselves but he also believed that normal precaution—what nurses call universal precaution—should be enough protection even for contact with an end-stage AIDS patient.

The technician arrived early the next day for the x-ray. The nurse was next and she implanted the tuberculin under the skin of his right arm. She circled the spot of implant giving the circle eyes and ears with a permanent marker and promised to return on the third day to read the result. At least she had a sense of humor. The blood guy showed up and Minor thought five tubes were too much. He explained that he had an extra red top in case the doctor called in an extra test. That way he would not have to return for another draw.

There was no change on the third day on Minor’s right arm, no swelling or redness. The nurse concluded that it was a false negative because of his exhibiting symptoms and promised another test in two weeks. This was part of his frustration with the medical profession. A test should either be positive or negative. A false negative should not be an option. If it is an acceptable option, it should be interpreted as a positive since everybody knows that two negatives equal a positive. There would not be another test in two weeks, he was sure about that.

Once again, Minor’s suicidal ideation was on the high. He actually had devised a plan that would be least painful but highly lethal. He would take all the left over medications in his cabinet and chase it with a bottle of his favorite wine. If he did not throw up, then there would be no mess like a gunshot would make. Whoever discovered his body would not be as traumatized as they would have been if he shot or hung himself. Moreover, he was way too weak physically to hang himself and too weak-minded to shoot himself. Overdosing would be less drama for all involved. It was very interesting to Minor that he would spend so much time being concerned about whoever would discover his body—what difference did it make as he would have been gone? But Minor did care, and it was important that his misery did not complicate another person’s life. A messy site might cause a lifetime of trauma to whoever would find his body.

The loneliness was killing him faster than his diagnosis. It was easier to deal with not having friends when he could move around and take care of his affairs. These days everything had to be brought to him and the people delivering his meals, his medications or cleaning his house knew that he was deathly ill. They must by now also know that his illness was contagious. None of them felt the need to get to know him as a person. They either ran in and out shoving the bill at him for a signature or they dressed up like beekeepers if they had to stay for work. They would hardly say a word to him and if he really needed anything at this time of his life, it was to hear another human voice. He was desperate for the voice of somebody with good eye contact, validating him while talking with him. It could be a conversation about the price of tea in China, the topic did not matter. The television did not replace this need for him. Actually, the television had become annoying theses days. Certain radio stations were more consoling and he always had the radio on, but a human voice would really make a difference.

The delivery people and cleaners knew to get his signature on their bills before leaving. Minor had set up an arrangement with his attorney and accountant to take care of all his bills, which were mailed directly to their offices. Once in a while, one of them would call to clarify a bill or get an authorization to pay for a purchase without his signature. He had stopped his addiction to buying items on the Internet. Now he only bought holiday presents for his Uncle Eugene. He spent money regularly these days only on groceries and meals. Even those had gone down markedly with his diminished appetite.

His attorney was now suggesting a move into an Extended Care Facility in Florida, San Francisco or anywhere with beautiful weather. Minor sure had enough funds to spend the rest of his life in one of those places but he feared the unknown. He was very uncomfortable with the idea of being in a strange place with strangers since his illness was politically incorrect. He also did not want to be outside his home, which he bought as the home he would die in. He would gladly take the pills instead of move out of his home to any long-term placement facility.

Meanwhile, the nurse called about stopping by for the second tuberculin test and Minor told her it would not be necessary. She attempted to argue that it was an order from the doctor and had to be carried out. Minor invited her to sue him and hung up before she could respond. His doctor called him and suggested a biopsy. Minor asked him what good that would do. He informed the doctor of his decision to stop all tests and procedures knowing that nothing would put him in remission. It was his opinion that he would rather leave his wealth to Brown University where his parents had graduated from instead of wasting it on medical personnel. His doctor agreed with him, but for his legal protection, he requested that Minor sign a Refusal of Medical Intervention form and a waiver to discuss his case with his attorney.

Weeks after signing the forms for the doctor, Minor started receiving brochures in the mail from various Long Term Care facilities. His attorney must have taken it upon himself to send out for brochures. Instead of making him excited about relocating, the brochures increased his determination to die in his home. The facilities appeared too impersonal and he lacked the physical strength for all the changes he would have to endure.

He embarked on a plan to make an honest attempt to find a companion who would talk to him. Someone who would not run out of his house once his or her bill was signed. He was going to look for someone who would respond to his call bell if he fell, if he was too weak to make it to his bathroom, if he threw up all over himself or if he was just afraid. Minor wanted someone around him who would not be in a beekeeper suit all the time. A simple mask and plastic gloves would provide enough protection. He had concluded on his own that he was positive for tuberculosis amongst other things. He did not need a biopsy, a chest x-ray or another tuberculin test to prove that. The night sweats along with his constant febrile state, the blood streaked sputum and regular cough all led him to tuberculosis. His companion should be protected from the air around him especially now that he coughed constantly. With no idea what he would pay this companion, Minor planned to also offer them room and board. It would be a challenge to find someone willing to risk his or her life just to take care of him but Minor was determined to give it a shot. If he failed in this venture, then he would have justification for his suicide.

He stopped all contact with the medical personnel. The pharmacy was to deliver only Marinol, which he used for pain and supposedly for appetite improvement, though his appetite was not improving. He would also accept Nystatin for thrush and Lidocaine to numb oral pain and make the act of eating more tolerable. The plan was to call for supplies like chucks and gloves when needed. He really wanted the thrush to go away so he would not have to take Diflucan forever. Opportunistic infections were like some humans: they take advantage of the weak.

COMPANION WANTED

Light housework expected

Room and board provided.

Call 401 555 8360

This was the ad that Minor put in the Narragansett Times.

Hello, he heard when he picked up his phone. The accent was obvious but difficult to place.

Hello! Who is calling? Minor inquired.

Did you put the companion ad in the paper? she asked without giving her name. The accent was British but with some African or Jamaican hint to it.

Yes, I did, but that was over a week ago he responded, relieved that he had finally received a call from the ad.

You forgot to include the salary! she said, sounding like she was giving him a great tip for successful advertisement.

It didn’t state a salary, he clarified, wondering if that was the reason he had received no calls until then. Minor was interested in attracting the right human being, not someone bidding for the highest salary.

Oh! she said, sounding disappointed.

But you can come talk with me and we may agree on something, he said in haste, not wanting to lose her, as this was his third and final ad. The long planned suicide would have to be the next step if nothing happened from this ad.

He had placed all his old medication bottles by his bedside and bottle of white Zinfandel. He used to take quite a lot of medications including the basic Combivir and Viramune. He still had all the different antibiotics and his Valium and Trazadone for sleep. His bottles of herbal collections were also added to the pile. It was equal opportunity for all pills, as he did not know exactly what amount of which exact pills would do him in. For some unknown reason, he decided to take the herbal pills last. The open display of all the empty bottles would be an obvious clue to his death. There would be no time and money wasted on investigations. He did learn that insurance companies would not pay for suicidal deaths. Thank God his wealth was inherited and he was not invested in any life insurance. His uncle and Brown University would still benefit from his death.

Three weeks ago he had placed his first ad in the Narragansett Times expecting a high call volume. He thought he would have a busy week meeting and interviewing strangers. When no call came at the end of the week, he got in touch with the ad editor and authorized another charge to his American Express card for a repeat of the same ad. The editor asked if he wanted to make any changes but he could not think of what to change.

He looked at the ad the next morning in the ‘Help Wanted’ section and wished he had bought a bigger space. The ad was lost in the midst of bigger ads looking for night time elder care and another for social assistance for movies, dinners, shopping and visits to the parks. There were a lot of needs for home-based care. An ad by a busy working mother looking for someone to take care of her two-year-old son while her husband ran his in-home business stood out because of its size. There was a man looking for someone to get his wife out of bed and dressed in the morning, then return at nine in the evening to put her back to bed. Minor wondered how this man was managing his wife during the daytime. What about trips to the bathroom? He guessed once the wife was up and dressed the husband was capable of manipulating the rest. Back to the ads, they were all very descriptive of the job responsibilities and pay offered. Minor was satisfied with his ad because it was an honest reflection of what he wanted – somebody to keep him company and assist with light housework. He decided he would have to pay for a bigger space for next week if he did not find a companion by then. That would definitely be his final attempt.

With absolutely no calls, he began to consider other details of his suicide; the day of the week, the outfit he would be found in, and his last meal. He called the ad editor on Friday and asked him to double the size of the ad and authorized a third and final charge to his American Express card.

On that Thursday in the middle of July, Minor was actually feeling relieved. No call meant his suicide was permissible. He concluded that more people in his community than he had imagined knew about the details of his condition. Why else would nobody call? Not a single soul!

I will meet you and discuss a salary, the voice responded firmly.

When can we meet and talk about everything? he asked, attempting to generalize the topic of their meeting.

I want to be your companion and do light housework for a salary, she insisted.

Let’s meet tomorrow, Minor pleaded.

I get out of class at half past eleven in the morning. I can meet you at the cafeteria at a quarter to twelve.

That’s it! She’s British! Nobody else says ‘A quarter to twelve or half past anything!’ Minor concluded.

Please do not ask me to leave my house, I beg of you. I am a very sick man.

So why do you want a companion? Companions are for people who are just lonely. You need a caretaker!

She must be very particular, he thought. What difference did it make? He was also lonely. Companion or caretaker, he needed a human soul.

Please, let’s talk tomorrow at noon after your class. Come to my house at number 5801 Boston Neck Road. I will have lunch waiting for you. Without giving her an opportunity to respond, he shouted into the phone, See you then!

In his haste, he hung up without getting her name or any other information. All he knew was that a female from the University of Rhode Island, Kingston campus would meet him at his house at noon the next day to discuss her job title and salary. He spent all day imagining