The Mystery of Love: in the face of the suffering of a child born with sickle cell disease

By Evariste Lubaki

“You who will know her through this story, pray for her.”
Evariste Lubaki belongs to the generation of scholars in Zaire whose career began with the promises of a newly independent country looking forward to a prosperous future, only to be dragged into the debacle of the 2nd Republic.

For him the pain was twice as hard, as he had to live this dramatic period as a father to a daughter born with sickle cell disease, supporting his child and family through a struggle which lasted for thirty years.

The Mystery of Love is the moving testimony of a battle bravely fought against the disease through the heavy heart of the parent, fighting against his own powerlessness.

It is also a love story to his incredible daughter Anne Lubaki, who lived the disease with a grace and humanity which continues to inspire.

• Language: English
• Publisher: AuthorHouse UK
• Release date: Jun 19, 2024
• ISBN: 9798823087971

Evariste Lubaki

Evariste LUBAKI was born in Kisantu in the Bas Congo region of Zaïre (now Democratic Republic of Congo) in October 1942. He graduated in 1967 with a law degree and worked as a school teacher in Lemfu, Bas Congo before joining Unilver company, Plantations Lever au Zaïre (PLZ) in 1969. He spent the majority of his career in Human Resources working in remote regions across DRC. He is now retired and lives in Kinshasa with his wife Madeleine.

Book preview

© 2024 Evariste Lubaki. 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.

Published by AuthorHouse  06/18/2024

ISBN: 979-8-8230-8796-4 (sc)

ISBN: 979-8-8230-8797-1 (e)

Library of Congress Control Number: 2024910842

Any people depicted in stock imagery provided by Getty Images are

models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

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.

CONTENTS

Acknowledgements

Preface

Foreword

Part 1   The Parents of Anne Lubaki N’yesi

Part 2   The Birth and Life of Anne Lubaki N’yesi

Part 3   The Illness and Death of Anne Lubaki N’yesi

Final Part

Conclusion

About the Author

Endnotes

ACKNOWLEDGEMENTS

There is a lump in my throat as I write these words as a cenotaph to my daughter to honour her memory. She now lies in the following pages. By being absently present in this book, she continues to do what she loved to do most when she was on earth: to visit her friends, that is to say whomever will let her in by reading this book, since she remains concerned by one thing only, as those who knew her have experienced; to help back up those who have fallen down, to support those who are about to break, and to walk with those who have hope in their hearts.

This text would not exist if it wasn’t for the kind encouragement of a restricted circle of friends, whose deep respect we never lost, even when we utterly and completely lost the imposing prestige that comes with possessions and status in our modern society. They justified their loyalty by the intuitive awareness of what defines a real and meaningful friendship. I cannot thank them all, and will mention a few: Lazarist R.P. Jean Médard, KAKUJI NGOY, Premonstratensian R.P Théophile NZANZA MAFUT’AMAL, Raymond BATANGA and Philibert MATESO. Professor Joseph NDUNDU KIVUILA, who is truly the god-father. He realised early on during our exchanges that I was sitting on a project in its infancy, one which I was hesitant to complete. He encouraged me to focus on the work and guided and advised me. He remained by my side as I worked until I was able to place the manuscript in his hands.

Most of all I want to thank my wife and my son. Although they were strongly averse to reliving the torture they experienced when they lost a very sensitive part of themselves, and the difficult task they then undertook to find balance again in our lives, they bravely agreed to remember and to contribute to this testimony.

It was one thing to write this book, but another to ensure its viability. This vital step in the life of the book was generously and spontaneously taken care of by, in alphabetical order:

Raymond BATANGA

Arnaud IZUA (ASSACOM)¹

Ambroise KABASELE

Agnès KASONGO

Daniel KIALA (ASSACOM)

Adolphe KILEMBI (ASSACOM)

Lou LUBAKI LUNTADILA

Valentin MAYIFUILA (ASSACOM)

Sherree SCHAEFER

Apprehensive to the fast-growing hedonistic trends in our society that consist in seeking pleasure, leisure and wealth, these extraordinary people have tried to rehabilitate deeper values such as the ability to sacrifice, the choice of a sober lifestyle and the practice of solidarity. They voluntarily chose to give up a lot in order to ensure the publication of this testimony. And though they asked for their efforts to remain unreported, I am ashamed to not be able to do more than to say: thank you.

"You, who will know her through this story, pray for her."

PREFACE

André Cnockaert, s. j.

Former Professor at Notre Dame de

Mbansa-Mboma High School

"…and since the disease was there, we had

to do what was necessary to fight against it"

Albert Camus, The Plague

Evariste LUBAKI belongs to the generation of scholars whose career beginnings coincided with the promises of a newly independent country looking forward to a prosperous future, only to be dragged into the debacle of the 2nd Republic. For him the pain was twice as hard, as he had to live this dramatic period as a parent. Father to a daughter born with sickle cell disease, an incurable genetic disease which causes many growth and health issues to those who suffer from it, he supported his child through an ordeal which lasted for thirty years, thanks to medical progress.

His tale of the experience is moving for more than one reason. The mystery of evil, which is most acutely present in the suffering of the innocent, is made tangible in the account of a battle bravely fought against the disease, on which the author looks back. Without pathos, but with the heavy heart of a parent in love with his unhappy child, fighting against his own powerlessness and an insidious temptation to blame himself. A daily fight, told with much modesty, to not sink as a man and to preserve as best he could his marriage and family.

And so, this is not the tale of a forfeiture or failure, but the testimony of human greatness to which those facing injustice can aspire and decide not to be defeated but rather to fight with dignity until the end. Was it Albert Camus who said, in The Plague, that if blights and suffering destroy many men, they can also make some grow up and teach us "that there is more to admire than to despise in mankind"?

Therefore, pain and suffering, especially that of undeserving innocents, are a mystery. What is this mystery in which pain and love are bound together so tightly, a mystery that makes us grow through pain to reveal us to love? Anne LUBAKI certainly experienced this mystery. Despite her many health issues, she grew up to be more concerned by others than by herself and her poor health.

May this testimony help many other families who are experiencing pain, to overcome hardships and to do so with proactive dignity rather than rebellion or resignation.

FOREWORD

Who could challenge the common assumption that no two lives are the same? And yet we speak of life, particularly when imparting traditional wisdom, as if it were the same for all. This latter idea seems to assert that we share a common ground, made of pain, solitude, sickness, disability…and death. Faced with these threats to the core of our being, we are each expected to come up with an answer. This answer will only be suitable on two conditions. First, it should take into account the existential conditioning we receive from our parents, our biological legacy, and from the society we belong to; rich or poor, where white people, black people, Christians or Muslims for example may not be welcome, or where women are seen as inferior.