Becoming Dead Right E-Book

Frances Shani Parker

• Herausgeber: Loving Healing Press
• Kategorie: Fachliteratur
• Sprache: Englisch
• Veröffentlichungsjahr: 2007

Seitenzahl: 279

Beschreibung

All of us are entitled to the rewards of a peaceful, pain-free death. This book honors that with true stories about hospice patients and inspiring insights from the author. Becoming Dead Right guides us through the general and "how to" information maze that prepares us for dealing with death.

Improving and expanding hospice services will require systemic changes in healthcare institutionss outreach to diverse populations, and funding. With the inclusion of hospice programs in nursing homes, dying with dignity becomes even more important. Millions of aging baby boomers heighten the urgency for better hospice care and conditions in nursing homes.
Praise for Becoming Dead Right "A school principal and hospice volunteer, Frances Shani Parker relates her experiences with dying people in nursing homes. The second part of her book is about what we as individuals and as a society must do to improve things for those who are dying. I particularly enjoyed the guided tour, conducted from a wheelchair, of Baby Boomer Haven." -- Dr. Roger Woodruff, Director of Palliative Care, International Association for Hospice and Palliative Care, Austin Health, Melbourne, Australia
"The writing is eloquent and powerful, and the stories are instructive and lasting. After finishing this book, I wanted to do more for other individuals who are dying, for as Ms. Parker so clearly imparts, the dying teach us so much about living well." -- Dr. Peter A. Lichtenberg, Director, Institute of Gerontology, Wayne State University, Detroit, Michigan
"This book is filled with poetry, stories, wisdom and common sense that can help boomers, students, caregivers and policy makers understand their own aging and realize that our society can - and should - make important changes that can ensure safe, dignified, individualized care at the end of our lives." --Alice Hedt, Executive Director, National Citizens Coalition for Nursing Home Reform
MED042000 Medical : Terminal Care
FAM017000 Family & Relationships : Eldercare
SOC036000 Social Science : Death & Dying

Leseprobe

Becoming Dead Right

A Hospice Volunteer in Urban Nursing Homes

Frances Shani Parker

Becoming Dead Right: A Hospice Volunteer in Urban Nursing HomesCopyright © 2007 Frances Shani Parker. All Rights Reserved.No part of this publication may be reproduced, transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, or stored in a retrieval system, without the prior written consent of the publisher.

First Edition: September 2007

Library of Congress Cataloging-in-Publication Data

Parker, Frances Shani, 1945-

  Becoming dead right : a hospice volunteer in urban nursing homes / Frances Shani Parker. -- 1st ed.

     p. cm.

  Includes bibliographical references and index.

  ISBN-13: 978-1-932690-35-4 (pbk. : alk. paper)

  ISBN-10: 1-932690-35-2 (pbk. : alk. paper)

  1. Hospice care--Michigan--Detroit--Anecdotes. 2. Terminal care--Michigan--Detroit--Anecdotes. 3. Palliative treatment--Michigan--Detroit--Anecdotes. 4. Parker, Frances Shani, 1945- 5. Volunteer workers in terminal care--Michigan--Detroit--Anecdotes. I. Title.

  R726.8.P3556 2007

  362.17'5609774--dc22

2007011692

Distributed by:

Baker & Taylor, Ingram Book Group, New Leaf Distributing

Published by:

Loving Healing Press

5145 Pontiac Trail

Ann Arbor, MI 48105

USA

http://www.LovingHealing.com or

[email protected]

Fax [phone]

Loving Healing Press

Praise for

Becoming Dead Right

“Parker gently leads us to examine the serious and undiscussed topic of death in this country by focusing on the lives of Gail, Crosby, Bea, and others who teach us that the end of our lives can be meaningful. This book is filled with poetry, stories, wisdom, and common sense that can help boomers, students, caregivers, and policy makers understand their own aging and realize that our society can—and should—make important changes that can ensure safe, dignified, individualized care at the end of our lives.”

—Alice H. Hedt, Executive Director

National Citizens Coalition for Nursing Home Reform

Washington, DC

“Becoming Dead Right gives us a blueprint for how we should approach dying and death. The author, through her impelling personal experiences as a hospice volunteer and her descriptive details of how each individual claims death, enfolds the reader into the many short stories that make us understand what hospice is all about.”

—Karyne Jones, President and CEO

National Caucus and Center on Black Aged, Inc.

Washington, DC

“Before I read this book, I knew very little about hospice care. Reading this book was extremely enlightening. It is so interesting and well written that I could hardly put it down. While maintaining universal appeal, perspectives of people of color are emphasized. I highly recommend this book as a “must read” for every individual who has ever experienced the illness and death of a loved one or who ever will. That includes everyone.”

—Naomi Long Madgett, Ph.D.

Poet Laureate of the City of Detroit, Michigan

“There is no better description of cross-generational bonding and mutual learning than is found in Becoming Dead Right. Parker opens an amazing door of possibility with her lucid description of the loving intersects between students and nursing home residents. Drawing deeply from her own vivid experiences with elders in her family, Ms. Parker makes the case for more formal attachments between schools and nursing homes, using the emergent pedagogy of service learning.”

—James C. Kielsmeier Ph.D., President

National Youth Leadership Council

Saint Paul, MN

“Ms. Parker leans on her years as educator and hospice volunteer to challenge us to look beyond stereotypes that pigeonhole our beliefs about what the elderly and the young can do when given the opportunity. For many, this door of opportunity is opened by service-learning, a teaching and learning method that engages young people in solving problems within their schools and communities, as part of their academic studies or other intentional learning activities. Ms. Parker’s book is a blueprint for action and an example of compassion that I hope many will read and also follow.”

—Nelda Brown, Executive Director

National Service-Learning Partnership at the Academy for Educational Development

Washington, DC

“The author, an inner-city hospice volunteer, pits her humanity against the neglect, shame, guilt, and fear that death and terminal illness provoke in modern urbanites. She weaves the invaluable lessons that she had gleaned from her vast experience with loving but unflinching sketches of her charges, her own poetry, and scathing, compelling dialogs. It is an incredible read, suffused with the surrealism that is an inevitable part of daily life in slums and housing projects, hospitals and care centers.”

—Sam Vaknin, PhD, author Malignant Self-Love

Table of Contents

List of Poems

Foreword by Peter A. Lichtenberg, Ph.D.

Introduction

Part I: Everybody’s Story, Ready for the Telling

Chapter 1 – Message From The Universe

Chapter 2 – Defining Moment

Chapter 3 – Nursing Home World

Chapter 4 – No Restful Stillness

Chapter 5 – Rainbow Smiles

Chapter 6 – Pieces of Our Minds

Chapter 7 – Love Food

Chapter 8 – Mealtime Gathering

Chapter 9 – Death Sentences

Part II: Footsteps to Caregiving, Death, and the Future of Hospice

Chapter 10 – Caregiver Guidance

Chapter 11 – Death Journey

Chapter 12 – Death Rituals

Chapter 13 – Bereavement Support

Chapter 14 – Healthier Hospice

Chapter 15 – School-Nursing Home Parternship

Chapter 16 – Baby Boomer Haven

Ten Tips for Becoming Dead Right

About the Author

Bibliography

Resources

Index

Poems

Remembering Jake

Defining Moments

Living Colors

Victory

Sounds of Ecstasy

Pieces of Our Minds

Missing

Mealtime Party

The Other Side of Through

Deeper than Words

Invisible Train

Ground Zero

Love Poem from the Other Side of Through

Choosing Yes

Student Reflections

Reflections of a Hospice Volunteer

To rainbow smiles for everyoneon both sides of Through

Foreword

In his book, Time of Our Lives: The Science of Human Aging, Tom Kirkwood examines the biology of aging and notes that death is unfamiliar to so many young-adult and middle-aged individuals. Whereas in the 1880s only 74% of children born reached the age of 5, now over 99% do. Even at age 45, 96% of those born will survive to that age compared to barely over 50% in the 1880s. Thus, death is unfamiliar, uncomfortable, and increasingly a taboo topic. The dying are invisible to us, as they are mostly engaged in the dying process in hospitals or other institutions. Frances Shani Parker makes death and the dying a vivid part of life in her book Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes.

Ms. Parker describes the beginning of her journey into the world of hospice in the early chapters, engaging us in stories about men she knew who had HIV/AIDS and were dying. Her writing is excellent, and we see these men as whole individuals and not just as people dying. Ms. Parker brings her extraordinary gift of being able to see the many aspects of a person even when often these are covered up by pain, disease, or dementia. Section 1 of the book contains many stories of people and her experiences with them in nursing home settings. Ms. Parker astutely observes the challenges of nursing home staff as well and eloquently writes some of their stories. Ultimately, though, we are treated in this first section to Ms. Parker’s love and compassion for those she serves and her humility in serving them. Her writing is tinged with profound respect for the individuals she worked with and helped. Each chapter closes with her lessons learned and her own poetry, much of which is compelling.

In part two, Ms. Parker broadens her book and gives advice and resources for the problems of caregiving, funerals, bereavement, hospice, and her dream for the future: Baby Boomer Haven. This part of the book is full of useful guides and facts, which will benefit all people caring for a loved one.

Ms. Parker was a school principal by profession. That title conjures up images of authority and power. It is thus striking that this book brings the stories of urban elders to the fore. Poverty, which so often makes people invisible, is not ignored here, but the stories of the human struggle, fear, kindnesses, and hopes predominate. This may be Ms. Parker’s greatest gift to her readers: bringing to life people and events that are indeed so often invisible. This book is truly a gift. The writing is eloquent and powerful, and the stories are instructive and lasting. After finishing this book, I wanted to do more for other individuals who are dying, for as Ms. Parker so clearly imparts, the dying teach us so much about living well.

Peter A. Lichtenberg, Ph.D.

Director

Institute of Gerontology

Wayne State University

Detroit, Michigan

Introduction

The writing of this book rose from a restless literary hunger that confronted me with the urgency for promoting positive conversations about end-of-life healthcare, death, and nursing homes. An inner-city Detroit hospice volunteer for nine years, I ventured weekly into nursing home worlds where many patients lived final phases of their lives. Insights gained through my experiences became the food source for this book. Including both general and racial-ethnic minority perspectives, I wrote these stories, poems and commentaries to feed inspiration and information to readers about hospice, nursing homes, caregiving, health care disparities, death, and bereavement. Story themes and characters, some who are composites, are true. Dialogue approximates what was actually said. Names and descriptions are changed often for confidentiality.

Death is a necessary portion of life. Expressing our feelings, ideas, and plans regarding death and its challenges empowers us and enhances how well we adjust when faced with the mortality of others and ourselves. As America’s buffet of populations continues to increase in age and diversity, important end-of-life concerns crave our attention. This book offers solutions for savoring, so we can all be nourished by gourmet satisfactions of dignified death journeys.

Part I:

Everybody’s Story, Ready for the Telling

1

Message from the Universe

They watch me all the time, even when I use the bathroom,” Jake lamented almost childlike. “They get mad when I don’t leave the television on the cartoon channel. I can’t sleep at night.”

“Is that still going on? Are you still having those same problems? I thought things were getting better for you. What about your friend? Did you visit him to get your mind off this like we discussed a few weeks ago?” I asked.

“Yeah, I went to see him over the weekend, and they came, too,” he responded wearily. “After I went inside, they made a big ruckus on the porch. It sounded like a whole bunch of them jumping, screaming, and laughing, just to get me all worked up. I kept running to the front door, opening it to catch them, but they would disappear too fast. My friend didn’t understand what was going on. I tried my best to explain it to him. Finally, he told me I had to leave. I got the feeling he meant for good. What do I do now?”

Jake was a tall, brown, wiry man I knew from the neighborhood where I worked. He was well mannered and concerned about the community. Over a period of time, however, our infrequent conversations slowly began to revolve around his personal troubles. While I empathized with his sincere pleas for help, his stories became more bizarre each time we talked. We had discussed his unseen stalkers on several occasions. They chastised him about anything he said or did wrong, even small things like forgetting to hang up his washcloth after taking a shower, or leaving a light on when he left a room.

In the mornings, they stood outside his front door and hollered out what he was eating for breakfast. A mocking tone of laughter always accompanied their loud recitation of the breakfast menu. Jake waited for them to start hollering. Then he would jump up, run to the door, and swing it open to a nothingness that shocked him. He tried to trick them one day by eating salad, but they still knew he was eating salad and harassed him more for trying to fool them.

Most of the time, they stayed home to watch television cartoons when he left to go to work or go on errands. Occasionally, they followed him and sometimes spent the day at his gas station job. They insisted that all his work be done correctly. If Jake didn’t do something right, they criticized him until he started over and performed successfully, even if it took many attempts on his part. At night, they made scratching noises on the ceiling above his bed to keep him awake. Sometimes they stomped on the back porch or beat on the walls, just to be mean.

These harassing hunters watched him through closed doors, from every corner of every room, on the street, in stores, at the bank, everywhere. There was no escape, no exit from this hell’s ghetto. Although they despised him, they had no plans to leave anytime soon. Jake was a desperate man grasping for control of his life. A drowning man, he kept grabbing the non-existent leaf. Although he said he was seeing a doctor, he insisted no one understood him like I did. The truth was I only understood he was a good guy with some dangerous demons.

For several months, I had watched Jake deteriorate from a confident conversationalist into a paranoid caricature of himself. Watching him wrestle with terror fascinated and frustrated me. When he showed up one day with Noxzema dotted all over his upper body, I felt sure my suspicions were correct about his having AIDS (Acquired Immune Deficiency Syndrome). I had read how AIDS-related dementia could affect a person’s mind with delusional thoughts. A closer look at his skin revealed scattered clusters of bumps like patches of ant bites. Anybody could see he needed medical treatment. We had discussed my concerns before, but he bristled with denial whenever I suggested he might have AIDS. Standing there looking like polka-dot confusion, he insisted his doctor said he only had a rash that would go away soon. He said he felt fine, but he surely didn’t look like it.

I was a Detroit public school principal working in a low-income, housing-project neighborhood that had one of the highest HIV/AIDS, drug abuse, and prostitution rates in Michigan. The many challenges inherent in this position were what attracted me to the job and location. Although I loved the school and community, the last thing I needed was another problem to solve. I certainly didn’t think talking with Jake in a friendly manner would escalate into life-threatening revelations. But Jake was in no mental condition to save himself. Ongoing chaos had become normal to him. Whether I wanted it or not, his agony, with all its desperate fury, had landed on my desk.

I asked him for his phone number, so I could explain my concerns to his family and encourage them to get him medical treatment. During my call to them, they told me they knew about his problems. They were tired of dealing with him and his fantasies. His brother added that I should quit wasting my time with Jake’s attempts to get attention. Jake had clearly been written off, in terms of their support for his condition. He had told me I would get that response. He said he had heard it all before, that they never took him seriously. In his starring role in this real-time horror movie, he continued to ride his catastrophic car of fear and helplessness. Somebody needed to steer this runaway ride. As much as I dreaded the task, I seemed destined to be that somebody.

Getting medical treatment for Jake became another item on my long list of priorities. I couldn’t trust him to handle the escalating pandemonium anymore. At the same time, I knew I wouldn’t ignore him. Convincing him to go with me and the invisible stalkers to see a doctor wasn’t easy. Everybody had jam-packed schedules, including me. However, sleep deprivation was smothering Jake with exhaustion. Although he denied the seriousness of his situation, a part of him welcomed the possibility of relief. Deep down inside him, memories of peace, privacy, and ordinary days, days that most people take for granted, struggled to maintain their presence.

Jake finally agreed that it made sense for all of us to go together. Maybe the stalkers were curious about this new twist in his routine. Perhaps he was tired of feeling beaten up all the time. Whatever the motivation was, an unknown number of passengers and I piled into my compact car. Jake sat in front next to me. Looking at him and toward the back seat, I told everybody to buckle up and waited while they did.

A few weeks later, my visits with Jake took place in a hospital where he had undergone a series of tests. Doctors told him he had advanced AIDS, but he continued to deny his diagnosis. When I mentioned to him that he had AIDS, he immediately responded, “Look, I don’t have AIDS. I don’t know why that doctor keeps saying that. Don’t believe him. He’s lying on me.”

The decline of Jake’s distorted mind and worn-out body progressed. The invisible people’s visits dwindled. They preferred staying home watching television, rather than spending time in a crowded hospital. Jake was taking tests and too sedated to notice them most of the time. Besides, they had his whole flat to themselves with him out of the way. Jake still kept me abreast of their activities the few times they did come to the hospital. They looked around and made sure he followed the rules. Eventually, he was transferred from the hospital to a secluded area in a nursing home on the other side of the city.

The stigma attached to AIDS caused several people, including some of Jake’s friends and family members, to treat him with contempt. Some felt he deserved the disease for being gay. Others avoided him because they were afraid the disease was contagious if they touched him or had contact with things he had touched. After researching AIDS, I thought I would be safe as long as I avoided contact with his body fluids. I noticed that staff members treating him always wore gloves.

When Jake finally accepted his approaching death, he requested that a close male friend come visit him. Maybe he was the same man who had told Jake to leave his house earlier. This simple request for a visitor meant everything to Jake because he knew he would die soon. The friend refused to come, saying he didn’t want to see him in that condition. Jake was left with his last request denied.

I participated in Jake’s end-of-life care, along with his daughter Cherelyn, a young woman in her twenties who showed real concern. We saw each other a few times at the hospital and started comparing notes regularly on the phone. After discussing Jake’s worsening condition and his impending death, we realized a lot needed to be finalized before he died. Personal information about him had to be gathered. We contacted insurance companies and former employers. We explored every possible death benefit. I was impressed with Cherelyn’s dedication in staying centered as we completed various tasks. Trying to be her cheerleader, I advised her when she experienced obstacles. When I asked her why she stuck by Jake when several other family members hadn’t, she said, “I always looked up to Papa Jake. He’s the first person in my family to finish high school. He kept me going until I finished high school myself. That means a lot to me. Plus, I love him as a father. Even though he didn’t raise me, he did what he could. His life has always been hard with a lot of rejection.”

I admired her as she nurtured Jake at the nursing home. Neither of us had handled a situation like this before, but we made good progress. We talked and learned as we stumbled along in this new territory that confronted us with thoughts about life, death, and people’s reasons for acting in negative ways during a crisis. In the midst of all these responsibilities, Cherelyn struggled to take care of her husband, children, and job duties as a waitress. She mentioned several family incidents of disloyalty toward Jake that frustrated and saddened her, but she never faltered in her personal devotion to him.

Knowing how stressed she was, I offered to write Jake’s obituary for her. But Cherelyn felt that was something special she had to do herself. Writing in an informal voice, she soulfully described times she remembered with Jake. Sprinkled with exclamatory bursts of excitement like “Papa Jake’s the greatest!” with a few typos and misspellings, it was the sweetest, from-the-heart obituary I’ve ever read. This young woman made of topnotch titanium was a living example of service being nothing but love in work clothes.

One quiet night, Jake lay quietly with a morphine pain patch on his chest. The damaged car of his life had reached its final destination. His previously fluctuating breathing eased slowly into a silent breeze. He closed his weary eyes for the last time as his engine stopped. The invisible demons left for good. His only stalker was Death.

Without either of us realizing it, Jake had introduced me to hospice care. I thought my experience with him was a once-in-a-lifetime occurrence. Like a flowing river, time passed while I labored to swim with the current. A year later, an acquaintance named Sam broke down crying in the parking lot after an exercise class we attended. I only knew him from the class, and he had stopped coming regularly. He told me he had been diagnosed with AIDS. He had kept this secret from others as long as he could. Because he had been absent so often from his job at a hardware store, he knew he couldn’t go on working much longer. Family problems increased his need for help. His story resonated with déjà vu that I had no desire to revisit. Perplexed that a similar crisis could be happening to me again, I imagined familiar thorns invading my life’s pruned rose garden.

Sam’s stable mind concentrated on improving his health. He acknowledged he had AIDS and committed to fight for his life. He knew the time had come when he would have to tell others his secret. We both knew judgment and rejection would follow. I became a better listener by staying quiet while he rambled on about his plans for coping with his illness. He had already started his treatment regimen with a doctor. We went to his clinic appointments together sometimes. His nurse taught him a complex system of using pennies to keep track of the many medications he took around the clock.

Ongoing nausea and diarrhea suppressed most of his desire to socialize with others. He didn’t seem to have many friends who were supporting him. Rotting teeth continued to add anguish to his growing list of illness issues. Hoping to get some help, he finally went to a dentist. The dentist examined his mouthful of decayed teeth and promptly announced, “Your teeth are all beyond saving. Any work done to replace them would be extensive and also expensive. There’s no reason to go forward with this anyway. You have AIDS and probably won’t be around much longer.” Some words are better left unsaid or said differently, even when they might be true. The dentist’s response angered Sam tremendously. He saw this as another hole in his rapidly sinking life raft.

Sam and his family disagreed on several matters. A few relatives had concerns about visiting him at his home. This bothered him because he felt they thought he would contaminate them with AIDS, even after he had explained to them that he wouldn’t. In spite of these problems, there was definite support from a few family members who genuinely cared about him. On rare occasions, relatives came by to visit him. But usually he visited them at their homes.

Even though Sam mentioned seeing a few friends now and then, something was still missing. That something was communication with people who shared his condition, people who could hold on with him to the raft of one another, people who lived his inner turmoil like the rest of us didn’t. He joined an AIDS support group and attended regular meetings that offered him opportunities to share his feelings with others who had AIDS.

Sam explained to me, “We go around the room, say our names, and talk about our problems. I thought my situation was bad, but I was surprised to hear about other people who are worse off than me. Some people are out there by themselves with no support, except for this group. I was also surprised to see somebody else there that I knew. This was awkward at first, but later on, it was a relief seeing a familiar face. At first, I didn’t want to talk to anybody in the group because I didn’t trust them. I felt like I didn’t know them well enough to tell them my personal business. Finally, I loosened up. They are the only people who really understand what I’m going through, so I had to open up to them. I know they help me.”

“How do they help you?” I asked.

“Well, when I’m with them, I feel like I’m not the only outcast in the world. You think I don’t know what I look like in the mirror? That I don’t remember how built my body was when I went to exercise classes? I do. Now, I look like a bony freak. I can see why other people stare at me and move away. I’d probably do the same thing if I was in their shoes. But when I’m with my support group, they don’t care how I look. They can see past the ugliness of my outside. It’s like I’m fighting a war with other people like me on my side. We tell each other any information we know that will make our lives better. Even when it looks like I’m losing the war, they give me hope for the future. I give them hope, too.”

Knowing how important this kind of communication was to Sam, I started collecting books for him about people with AIDS. Reading about other people who had what he often called “the virus,” he stayed home many days resting on a bed full of his own bones. He delighted in reading words spoken by loving families and friends of people who lived and died with dignity, in spite of society’s obstacles and the overall trauma of the disease. Their powerful words formed a rope he could hold onto when the temptation to surrender pressured him to let go.

Christmas came with all the usual holiday gatherings and excitement. Sam remained miserable about his declining condition. He knew his days were numbered and that every holiday could be his last. I had a live, decorated, tabletop tree sent to his house to cheer him up. I could not have imagined how ecstatic he would be about receiving that tree. Displaying it in his living room, he took great pride in reminding guests, “This is a real tree, not a fake one. It came in the mail to my front door. And guess what? It had all the decorations on it!” Not wanting to throw his tree away, he managed to plant it in the back yard after the holidays ended. Even after the tree died, he still wanted to replace it with a similar tree.

Sam’s skeletal body, decaying teeth, and persistent thrush—a white, patchy, fungal infection of the mouth—chilled him with cold winds of depression. That year the Centers for Disease Control and Prevention reported that 62% of the 501,310 people who had been diagnosed with AIDS across America had died, and many more were being added daily. Some days, Sam made no effort to do anything beyond basic survival, and that entailed a lot. Death seemed to be the only major event left in his future.

Around this same time, word started spreading around the country about an upcoming Million Man March in Washington, D.C. Sam warmed up to the possibility of going, even though his participation there appeared to be the longest shot in the world. This undertaking seemed impossible because he had no way of getting there without help to sustain hardships of traveling in his weakened state. He told everybody he knew how badly he wanted to attend, especially people he knew would be going. Although they encouraged him to keep trying, most of them did not want the responsibility of taking care of him. Days came and went, distancing his dream from reality. The day before the deadline date arrived, a couple who had heard about his plight decided to take him with them. His desperate request had delivered an energetic call, and the universe responded. We rejoiced when the couple committed to being caregivers who promised to look out for him during the entire trip.

Sam made history on October 16, 1995 when, joined by thousands of people across America, he marched proudly with fellow Detroiters—mostly men, but also women and children—demonstrating commitment to a cause that would benefit humanity. Like many who participated, his involvement in the Million Man March ignited a fire in his spirit that reinforced his desire for creating positive changes in the future. It was a day of atonement and reconciliation, a day that called African American men to rededicate themselves to improving self, family, and community. Sam reached his goal that day and literally became one in a million.

Several weeks after Sam returned, he witnessed a large man brutally beating a woman in the street. He watched as long as he could and then resigned himself to get involved. Even though he was extremely weak, he persisted in trying to make the man stop by talking to him about the purpose of the Million Man March. Miraculously, the violence ended when the man freed the woman and listened. Sam told me later he was afraid of getting hurt, maybe even killed, but he still had to try to end the brutality. This was no small accomplishment for a thin man weighing about one hundred pounds. The march had empowered him to confront fear and take a stand for righteousness. I thought he had experienced his last joyous milestone.

One day, Sam told me that during the previous night, his head was spinning so fast, he didn’t think it would stop until he reached outer space. That was the night he was sure he would die. When he tried to sit up, he fell back. Breathing seemed like lifting a boulder on his chest. Calling 911 or anyone else wasn’t an option because his limp hand couldn’t pick up the phone. He just lay there and waited for forever to pass. He felt so bad, he welcomed death. It was the closest he had ever come to giving up.

But daybreak came like it always did. Sunlight fingers of warmth crept through each gap in his bedroom blinds. Sleepy eyes opened slowly to a new awareness that he was still alive. Advancing bars of brightness gradually decorated his blanket. Sam smiled, knowing the falling sky was lifted for another day.

Death, sitting patiently outside Sam’s bedroom door, still wasn’t ready to leave with him. When his body was ravaged in the last stages of AIDS, Sam started taking new drugs called protease inhibitors that revolutionized the treatment of AIDS. The drug “cocktail” changed AIDS from being an automatic death sentence to a chronic, but manageable, disease. As a result of this major advance in medical science, the number of deaths due to AIDS began to decrease. The prevalence of AIDS continued to increase, however, because infected people were living longer, while new ones were continually being infected.

Thrilled with improvements in his life, Sam no longer needed to take various medications day and night. His skin cleared, leaving a physical glow that reflected his inner light. His weight increased, along with his strength. Looking almost as good as he had before the disease stole most of his physical assets, he spoke with new enthusiasm for life. The gnawing pain that had gripped his body daily like a gigantic fist became much easier to bear. Most of all, he felt reborn.

Physically and mentally, Sam rose from a grave of suffering after being closer to death than most people can ever imagine. He experienced the Lazarus Effect that normalized his blood cell count and restored him to productive living. I was elated to be an eyewitness to this wondrous resurrection. His life became a book with unread chapters of future possibilities, beginning with a network of new friends he had met through his support group. He and his friends helped one another, sharing a bond that only comes through experiencing mutual long-term tragedy.

Sam had come full circle through a medical maze of potential hopelessness. Although I felt optimistic about his future, I knew that the epidemic of HIV/AIDS in America continued to spread in all sectors of society, increasingly among women, young people, and people of color. Sam and I kept in touch until he stopped returning my phone calls. Intuitively, I knew he hadn’t died. A few years later, we happened to see each other at a street festival. We spoke briefly, and he appeared to be doing well. When I asked him why he had stopped returning my phone calls, he responded, “I’m a busy man.”

During the years before I saw Sam that day, my life had normalized. I thought about the two men whom I’d hardly known before I’d found out about their illnesses. Somehow I had woven my way through their forests of misery over a three-year period. Nobody was more surprised than I was. A person who never liked being around sick people had been transformed into an urban Florence Nightingale. What did it all mean? I listened to the universe for answers.

A few weeks later at a grocery store, I had a chance meeting with a friend named Ellen, whom I hadn’t seen in quite awhile. She mentioned how much she enjoyed being a hospice volunteer, a form of volunteer work I hadn’t seriously considered, even as I had been unknowingly performing it. Although I had been actively involved in various kinds of volunteer work most of my life, I felt her words inspire me, open my windows of curiosity higher. Later, it occurred to me that I had been a hospice volunteer for Jake and Sam. The following week, I saw a newspaper advertisement for hospice volunteer classes. I signed up for the training and felt my ship getting closer to harbor.