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The Last Right
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The Last Right Craig Schonegevel’s Struggle to Live and Die with Dignity
Marianne Thamm
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First published by Jacana Media (Pty) Ltd in 2013 10 Orange Street Sunnyside Auckland Park 2092 South Africa +2711 628 3200 www.jacana.co.za Š Neville Schonegevel Family Trust, 2013 All rights reserved. ISBN 978-1-4314-0762-0 Also available as an e-book d-PDF ISBN 978-1- 4314-0763-7 e-PUB ISBN 978-1-4314-0764-4 mobi ISBN 978-1-4314-0765-1 Cover design by publicide Cover photographs by Sandy Coffey Set in Ehrhardt MT 11.5/15.5pt and Frutiger 0.5/15.5pt Job no. 001979 See a complete list of Jacana titles at www.jacana.co.za
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To Mom, Dad, George Irvine, Sandy Coffey, Quinton Gilbertson, Uncle Brian, Nana, Tony and Es – Craig SChonegevel
To all those people suffering with NF1 – neville SChonegevel Family TruST
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C ontents
Contents
PART ONE Preface: The End . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xv 1
The Beginning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
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Patsy: Life with Craig . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
3
Neville: The Journey Begins . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
4
Ethel: The Drawer under the Bed . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
5
Who Am I? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25
6
Overcoming Obstacles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31
7
Deciding to End It . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 38
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Why? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
9
My Son . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 52
10
Loose Ends . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57
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George Irvine: Sacred Turf – Encountering a Mystery . . . . . . . . . 75
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Sandy Coffey: Bosnia or Mauritius. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 85
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Not Quite Yet. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93
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Craig: In His Own Words. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
15
Ethel: Go with My Blessing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 126
16
Sarah: My Second Son . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130
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Surviving Craig . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 133
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 142 Epilogue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 144
PART TWO 1
What is Neurofibromatosis? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
2
The Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165
3
Legal Reform and Clarity. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 170
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Part One
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the end
Preface
The End
Taking my own life has been totally my decision and an act I have planned and carried out by myself. I am of sound mind and have always been. There are a number of people who will confirm this. The wait for Dignitas has become too much for me. They have not treated my parents and me in a dignified manner. Not once in the past six months have I doubted this to be my “way�. My counsellor will confirm this. Neurofibromatosis has raped me physically and mentally for almost 29 years. This disease as well as my complications with adhesions has become too much for me. I am tired of fighting. Even the strongest of soldiers grow weak. I want with all my heart and soul, with every fibre of my being, to be at peaceful, constant sleep. I want to go to a better place now. I have lived in my own personal hell for all of my life. I have so many blessings that I am so immensely grateful for, but the time has come for me to go to a better place. I ask people to read my book, my story, when it is published. It will show my heart, love and how I fought. I will wait anxiously Above for my loved ones. If, for some reason, my suicide attempt is unsuccessful, I do not give consent to be booked into a hospital or psychological institution. Signed CC Schonegevel 14 August 2009 xi
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* * * At 11:40am on the morning of 2 September 2009, Neville Schonegevel made a statement to Sergeant Yolandy Schoeman at his home in Port Elizabeth. The previous evening, Neville and Patsy Schonegevel’s only son, Craig Carstens, had successfully ended his life in the bedroom of his family home located in a neat townhouse complex in Summerstrand. Craig was 28 and this was his second attempt at self-deliverance. The following two-page statement is a reproduction of the handwritten one by Sergeant Schoeman and which was accompanied by two notes from Craig, one written on the evening of 1 September and the other on 14 August, before his first failed attempt. It is reproduced here verbatim with spelling and grammatical errors. In the interest of privacy, identity numbers and addresses have been edited out. On 2009/09/01 at about 21:00 my son, Craig Carstens Schonegevel went to his room. Craig closed the bedroom door behind him. At 22:30 the same day, I went to bed. On 2009/09/02 at about 6:00, I woke up. I noticed that Craig’s bedroom door was still closed and I went to check on him. I opened the bedroom door and saw Craig lying on his back on the bed. There was two plastic bags over his head tied close with two elastic bands around his neck. I removed the bags and found a white dust mask over his mouth which I removed. Craig showed no response. I also noticed an empty glass of the bedside cabinet. I went to call Rev Irvine who counsel Craig and Dr Westensee of Medicross Centre was also contacted. Rev Irvine counsilled Craig for the pass 6 months. Craig also attempted to commit suicide on August 14, 2009, drinking 49 Dormenock* tablets and Dr Westensee also assisted us. Craig was also *
Correct spelling: Dormonoct xii
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treated by Dr Ryno Verster. Dr Verster prescribed the Dormonock for Craig and he used one tablet per day to sleep. Neville Carstens Schonegevel states further under oath in English. Craig was diagnosed with Neurofibromatosis type one when he was a year old. When Dr Westensee arrived, he asked me if I know if Craig took any tablets. I found a empty blister pack of Dominock which holds 10 tablets as well as two empty single blisters in a bin, which was in the left-hand side corner of his bedroom. Craig also enrolled and was accepted as a member of Dignitas, which is an institution in Switzerland that assist foreigners as well as locals with suicide. I know and understand the contents of this statement. I have no objection to taking the prescribed oath. I consider the prescribed oath to be binding on my conscience. Signed NC Schonegevel Craig’s note was attached to the statement: This note should be read in conjunction with my suicide note dated 14 August 2009, and I confirm that what was written by me on August 14, 2009, and above suicide note remain valid. I also record that my Living Will must be adhered to and that my wish is for my life to be terminated. CC Schonegevel 1 September 2009
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IntroduCtIon
Introduction
“There is only one form of liberation for those who are continually submerged in suffering: to elevate suffering to the level of one’s own perspective and to transform it into an aid for one’s way of seeing.” – Rainer Maria Rilke in 1977, SuSan SonTag, iconic American literary essayist, novelist and activist, wrote a short but ground-breaking text, Illness as Metaphor, an analysis of society’s attitudes towards illness, specifically cancer and tuberculosis. In her introduction, Sontag identifies a state of being or the emotional landscape that those who have lived with illness or disease – or those who have loved and cared for someone who is ill – know all too well. Sontag wrote: “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” (Sontag, 1977) For most of his young life, Craig Schonegevel did not hold dual citizenship. From the moment he was diagnosed at 12 months with the genetically determined and extremely variable disorder, Neurofibromatosis type 1 (NF1, also known as Von Recklinghausen disease), he forfeited his “good passport” and took up a reluctant xv
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permanent residence in Sontag’s “other place”. (See Part 2, Chapter 3 for information on Neurofibromatosis type 1.) Craig’s first major surgery took place in 1988 when he was seven and a half and doctors at the Red Cross Hospital in Cape Town diagnosed a brain tumour, a cystic cerebellar astrocytoma, at the base of his skull. It was during this delicate seven-hour operation that Craig’s abnormally high blood pressure again came under the spotlight. It would later be diagnosed as bilateral renal artery stenosis – a narrowing of both arteries to his kidneys – and become a very serious complication. The operation for the brain tumour and the subsequent three further surgeries (one unsuccessful) in London to remedy the blood flow to Craig’s kidneys and which saw him (and Neville) spend over two months at the Great Ormond Street Hospital for Sick Children, marked Craig and his parents’ passage into the kingdom of the sick. In his short, 28-year life there were brief stretches of respite between the ages of around 10 to 23 when Craig was able to lead an “ordinary life”, eating food he enjoyed and making connections with other people. He attempted and accomplished a measure of success doing some of the things he loved, including training as a personal trainer and playing golf. But while the NF1 and his body might have been less of a concern or a distraction during those more carefree years, the social isolation Craig had experienced throughout his childhood and later adolescence left lasting and lingering emotional wounds. In a handwritten diary he kept from 2003, Craig often remarked how the other realm, the realm of the well, was a foreign country to him. On his frequent walks on the Port Elizabeth beachfront he would observe apparently carefree couples and their children and wonder what it might feel like to be like them. Things that are taken for granted by many people come with such great effort for me. The emotion becomes overwhelming when I think of how I will never lead the life I wish or attain the things I wish to acquire and achieve. Then again, everybody in life has issues or circumstances holding them back. But still, I wonder what “normal” would feel like, he wrote on the first page of his diary. xvi
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Six years later, in 2009, after the body that he had tried to look after and take care of so fastidiously seemed to “turn on him”, he decided he could no longer continue to live. Towards the end – while Craig was extremely health conscious, regularly went to gym and jogged and swam long distances – he feared his body would succumb to further lesions that had formed, causing painful obstructions in his colon and that resulted in further agonising surgeries. The medical prognosis began to look bleak also as, daily, new fibromas (subcutaneous swellings due to a growth of the cells that surround nerves) formed beneath his skin and tumours grew between his muscles. Craig became increasingly unable to imagine a future alone, without his parents to help and support him and in possession of a body that was becoming increasingly difficult to inhabit. He wanted to “leave”, as he wrote, “before the real Craig” had been completely obliterated by the disease. And his fears were far from imagined. In a 1999 book by Joan Ablon titled Living with Genetic Disorder: The Impact of Neurofibromatosis 1, the author documents 54 cases of people with NF1. (Ablon, 1999) (See Part 2 Chapter 3 for a comprehensive definition of NF1 as well as a list of manifestations and symptoms.) In her introduction Ablon writes: “Becoming familiar with the seemingly enormous range of possible symptoms of NF was a sobering and complex educational experience. I marvelled at the coping capacities of the persons that I interviewed. Most of these dealt not only with the immediate material features of NF1 but also the life consequences of serious learning disabilities and the uncertainty and insecurities spawned by their knowledge of the possibility of progression of physical symptoms. Societal stigma awaited them at every turn, and the spectre of ‘The Elephant Man’, long misdiagnosed as having had NF1, haunted many of them from their teenage years. Was this the future they must look forward to?” Craig referred to it as “the green book”. Covered in sturdy plastic, it provided him with ample evidence that his life and his health, rather xvii
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than reaching some bearable plateau, would, in all likelihood, grow increasingly challenging. Taking all of this into account, how should we view Craig’s desire to end his life? Was it a suicide in the generally accepted definition of the word? As former Methodist Bishop, Rev. George Irvine, points out in Chapter 13, he is of the opinion that Craig’s death was a self-killing rather than a suicide. What’s the difference? While there is no singular, universally accepted definition of “suicide”, it is generally taken to mean “the intentional taking of one’s life”.* However, the majority of the world’s suicides occur in circumstances of extreme anguish where an individual, for various reasons, is under severe mental pressure, be it as a consequence of external material conditions, clinical depression or other mental illnesses. Doctors generally accept “suicide” to be a premature death, hastened out of despair and where judgment may have been impaired. However, in light of the growing international debate surrounding self-deliverance, euthanasia, assisted suicide or mercy killing, as it is variously called, perhaps it is time to relook at the semantics and in so doing widen the scope of discussion and debate. It was one of Craig’s hopes that his life and death would contribute to this ongoing debate. Should a decision by a rational individual who is deemed “of sound mind” and who opts, within a set of legal and ethical protocols, to end his or her life due to a terminal illness or life-threatening condition still fall within the accepted definition of suicide? By all accounts, from those who loved, knew him or came to know him well, Craig’s decision to cut short his life was a rational and autonomous one. It was a decision that he knew would bring with it overwhelming sorrow and pain to those who loved him, but one that would also require of him an almost superhuman strength to “untie the *
According to the online Medical Dictionary http://medical-dictionary. thefreedictionary.com/suicide xviii
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strong and mighty bonds of life” as the Bohemian-Austrian existential poet, Rainer Maria Rilke, observed. Rev. Irvine is a seasoned pastoral counsellor with over 40 years’ experience. He was the founder of the now well-known LifeLine counselling service, is a former director of the SA Aids Foundation and the founder of the Institute for Spirituality, Wholeness and Reconciliation, an interfaith organisation. He spent four months listening to and counselling Craig about his decision. Rev. Irvine viewed Craig, he explains, as a “mystery” rather than a problem and in so doing was able to journey with him and accomplish Rilke’s directive that we “develop a deep and painful curiosity to explore this loss completely, to experience the peculiarity, the singularity, and the effects of it in our life”. Craig was a devout Christian who, from his writings and various comments, believed that God or a Heavenly Father would welcome him after his death. He believed that God accepted and loved him as he was and would not judge or reject him for ending his life, which had become, for him, unbearable. Rev. Irvine found that Craig was neither angry with God nor his illness, that he had tried hard to live with it but that he had simply had enough. NF, Craig said, had caused him pain and suffering and had resulted in his spending much of his life in hospital. He believed the disease limited him, his life experience, his health and his ability to form long-term, meaningful relationships with his peers and women his own age. He described himself as a brave soldier who had grown weary of the ongoing battle. Because of his faith and deeply held belief, Craig did not want to kill himself. He wanted his life to end legally, peacefully, listening to his favourite music while his mother and father held him as he exhaled his last breath. He believed that Dignitas, an organisation based in Switzerland, established in 1998 by lawyer Ludwig Minelli and the only one in the world to offer foreign nationals assisted suicide, would grant him that xix
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wish. (See Part 2 Chapter 1 for a more comprehensive international perspective on assisted suicide.) For the first time in his life, Craig – after finding Dignitas on the Internet – felt he would be “in control” of his life. It is unsurprising then that four months later, when the organisation responded that he had not got the “green light”, he was disappointed and angry. Dignitas informed Craig via email that physicians who had reviewed his case were of the opinion that he should undergo one last surgery to remove the tumour growing between the muscles in his upper left arm before reapplying. Considering Craig’s youth and the covertly ambivalent tone of the two supporting doctors’ letters he submitted with his application, it was not an unreasonable response. But Craig had made up his mind. He did not want to spend six months recovering from the surgery and had been preparing himself, spiritually and physically, for death. The anger that Craig must have been holding but could not express elsewhere became focused on Dignitas and he railed against the organisation in several emails to friends and family. I have always from the beginning had a Plan B. It has got to the
he told Sandy Coffey, a magazine features writer and photographer, whom he was meeting with almost daily. (See Chapter 16 for a comprehensive correspondence between them.) As Craig began to prepare and think about other options, his family, extended family and friends were drawn into the tragedy that unfolded during the last four months of his life. His parents Patsy and Neville; his beloved Nana (grandmother Ethel Schonegevel); Nontsebenzo Mjebeza, or Sarah, his “second mom” who had known him since he was three; Sandy, a mother of two teenage sons; his uncle and aunt, Brian and Rensche Gilbertson, in London; his past paediatrician, Dr John Wickens; Rev. Irvine; and others were all drawn in.
stage where I may very well have to use it,
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Without a set of protocols to deal with the profundity of the situation, they were flung into a maelstrom they were ill equipped to deal with. Craig’s suffering and his unwavering wish to die a dignified death also became the suffering of his parents. Not only did they have to contain and support Craig through his various illnesses, they now needed to support him with his decision. For Patsy and Neville, having to let their son “go” was to become the ultimate act of selfless, unconditional love they would need to offer. There was no room for them during those months to experience or express their own grief. Craig hoped that this book would help others and their families who, in future, might find themselves in a similar situation. Euthanasia and assisted suicide are issues that have periodically gripped national and international public interest as several countries revisit legislation, which currently makes it a crime in most of the world. Recent cases involving high-profile individuals (University of the Western Cape Professor Sean Davison, Belgian author Hugo Claus, British author Terry Pratchett, to name a few) have highlighted the need for ongoing debate and new legal frameworks. In South Africa there have been calls for renewed engagement by Professor Davison, sentenced by a New Zealand court to five months’ home detention for helping his terminally ill mother, Patricia, to die in 2006. He is one of several founding members of the recently established Dignity SA, an organisation petitioning for legal reform in relation to end-of-life decision-making in this country. In 1998, the South African Law Commission (SALC) published a final report, originally commissioned by former president Nelson Mandela, and which included a draft bill entitled End of Life Decisions Act 1998. The report has been “gathering dust” for more than a decade, says Professor Willem Landman, of the Ethics Institute of South Africa, who is also one of the founding members of Dignity SA. “We are dealing here with people’s deep-seated beliefs about the value of life and the purpose of suffering. But disagreement cannot xxi
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lead simply to an ethical stalemate – we need to find common ground in the spirit, values and rights embodied in the Constitution.” He presented a position paper, End-of-life decisions, ethics and the law: A case for statutory legal clarity and reform in South Africa, at the 1st Annual Congress of the Faculty of Consulting Physicians of South Africa this year. (See Part 2 Chapter 2 for a comprehensive overview of the law pertaining to assisted suicide.) The right to die is one of the last medical, legal and ethical frontiers. Advances in medical technology have resulted in prolonging life long after it may be “naturally viable” and this has raised a number of questions. The global debate is often fraught, with those with opposing views finding little or no common ground. Euthanasia and assisted suicide remain a deeply controversial issue, particularly when framed or argued through a religious, cultural or “moral” lens. The argument often pivots on the notion of the “sanctity” of life, a general belief that human life has an intrinsic value and that it is “godgiven” and that no human being has the right to take either their own life or that of another. In this argument, amending laws to allow euthanasia or assisted suicide would lead to a “slippery slope” where the vulnerable, the poor and those who might not be able to speak for themselves might be abused by those who wish to be “rid” of them. And it is precisely because of this danger that very strict protocols need to and do exist in those countries were euthanasia is not illegal. The debate about the right to die must occur within a secular, legal and ethical philosophical framework. Respect for human and individual rights is where the focus should rest and it is within the framework of international jurisprudence that we must try to seek answers and reopen the debate. The United Nations Universal Declaration of Human Rights was adopted in 1948 and drafted in the wake of the Second World War and the gross violations of human rights that occurred during that period. The Declaration is a touchstone for the creation of a more humane and moral universe and the first global expression of rights to which human beings are entitled. xxii
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While the ideals enshrined in the Declaration are noble and worthy, as human beings we still struggle to realise fully these rights across the globe. Suffering is a central tenet or motif of the Christian faith to which Craig subscribed. The crucifixion of Jesus Christ, His suffering before and during the event, is a symbol for many Christians that suffering is an integral part of life, a personal Via Dolorosa for each believer, a path to spiritual transcendence. But religion, particularly the Christian faith, also asks believers to work actively towards alleviating the suffering of fellow human beings. Would allowing someone who makes a rational and informed decision to end his or her life with dignity not amount to a demonstration of that very compassion which is, to many, at the heart of Christian faith? Craig wanted us to discuss these issues and move the debate forward. Apart from this, he also wanted to raise awareness about NF1 as a disease and highlight the difficulties and prejudice that people who are born with NF1, or any other disease or disability, have to face. Craig needed to describe his own struggle to live with a debilitating and degenerative illness and, while there may be many people who are able to accept their limitations and suffering due to illness, this was not possible for him. Like Rev. Irvine, Craig would have wanted you, the reader, to “park your judgment�, engage with his story and the stories of the people who surrounded him during the last months of his life and make up your own mind. When you have completed the journey, ask yourself: Did Craig do the right thing? What would you have done if you were Craig or his parents? Could it have been done any differently? Should it not be easier? Where do we go to from here? Patsy and Neville hope that this book, this story of Craig’s life and his death, will not only bring meaning to his suffering, strength and determination but also open the way for others with terminal illnesses or life-threatening diseases who believe that they too have a last right to die in peace. Marianne Thamm xxiii
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the BegInnIng
1
The Beginning
PaTriCia marilyn gilberTSon and Neville Carstens Schonegevel were married in the Mater Dei Catholic Church in Port Elizabeth on Saturday, 6 July 1974. She was 23 and he was 26 and they had met three years earlier while studying at the University of Port Elizabeth. Neville was in his fourth year of an Honours in Industrial Psychology while Patsy was in the second year of completing a BA degree. The university was the first dual-medium (English and Afrikaans) residential university in the country and was supported and funded in part by the secretive, nationalist political organisation the Afrikaner-Broederbond. Neville found himself drawn to student politics and was part of a grouping within the Student Representative Council that successfully challenged the views of the conservative University Council and the reactionary Afrikaanse Studentebond. Patsy recalls vividly how they first met: “He just winked at me during a psychology test and that was it.” Patsy is one of five children born in Bothaville in the Free State to Paddy (Francis) Gilbertson, an English motor mechanic who had come to South Africa during the Second World War to work on aircraft in George in the southern Cape, and his wife Sue (Susanna) Johanna Janse van Rensburg, the daughter of an Afrikaans-speaking couple. From George the family moved to Bothaville where Paddy worked for the Department of Water Affairs. From early on, Paddy’s mother, Frances, lived with the family, and Patsy and her grandmother shared a room. 1
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Patsy was the only daughter, a middle child, with two older brothers, Brian and Anthony, and two younger brothers, Terence and Kevin. She found growing up with boisterous brothers trying and they would often squabble. “They would pull my hair and tease me and my only recourse would be to bite them.” Paddy was later transferred by the Department of Water Affairs and so the Gilbertsons moved to rural Qamata in the Transkei. The family eventually settled permanently in Port Elizabeth. Paddy was a practising Catholic and would take his children to mass on Sundays although Patsy would sometimes accompany her mother to the local NG (Nederduitse Gereformeerde) church to which most Afrikaans-speaking South Africans belonged. Patsy recalls the family was “pretty average”, not wealthy by any means but they “never lacked for anything”. She was, she says, an average student until the start of high school at the Holy Rosary Convent in Port Elizabeth; until then she “just managed to scrape through”. After a serious talking-to by her parents she decided to pull herself together, excelled academically and began to take pleasure in studying. Patsy enjoyed a close relationship with her father and, later, her oldest brother Brian while she was in high school. “Brian had gone to Rhodes University in Grahamstown and I can remember him coming back at some point and locking me in the bedroom and making me listen to some classical music and not the rubbish I was listening to at the time.” Holidays, she recalls, were happy times in the home, particularly when Brian was around. It was also around this time that her mother, Sue, was diagnosed with breast cancer, which she battled until her death at the age of 59, shortly after Patsy and Neville had returned from their honeymoon. Neville was born in 1948, “the year the apartheid government came to power”, to Lionel Schonegevel, a farmer, and Ethel, a former schoolteacher, who farmed on Soetfontein in the Humansdorp district of the Eastern Cape. 2
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the BegInnIng
He was their second child; their first was a daughter, Lynette. Neville has a strong and enduring passion for the outdoors and the environment, a love rooted and nurtured during his rural childhood. The first seven years of his formal education took place in a small farm school established on an adjacent property. Neville was one of two pupils in his class in a school that consisted of only 15 learners. The children were taught by a woman who doubled up as its principal. The Schonegevel siblings were the only English-speaking children at the school and Neville recalls these formative years with fondness although he did learn, he says, how to cope with the consequences of “being different”. “For example, I fished and my mother knitted on Sundays and for this I was ridiculed. That and the fact that I was from a family who were strongly and openly opposed to the government of the day.” From the age of 10 Neville was sent to Grey Junior School in Port Elizabeth, about 100km from home. There he developed a love of competitive sports. A relatively “innocuous knock” during a rugby match became a “life-defining” experience for him as it later developed into a condition diagnosed as “osteomyelitis” of his left tibia and which resulted in three surgeries and confinement in hospital on and off for six months. The medical interventions also awakened in him a lifelong interest in medicine. At high school Neville participated in a range of extramural activities, which suited his outgoing, easy nature. He also held a number of leadership positions, including that of head boy. Neville recalls that a number of teachers at Grey High School were politically outspoken and contributed enormously to his growing political consciousness and opposition to the prevalent racism of the time. After their marriage, and unlike many couples at the time, the young Neville and Patsy were in no hurry to start a family. “We both just wanted to enjoy our lives and I had always told him that I didn’t want to have children,” says Patsy. Neville initially found work in Stellenbosch near Cape Town, before being transferred to Johannesburg where Patsy joined him. There she completed a teacher’s diploma at the University of the 3
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The LasT RighT
Witwatersrand but found teaching History (and marking History essays at 1am) not quite suited to her personality. She enrolled for a post-graduate diploma in Library Science and completed an Honours in Information Science. It was while working in a library in Germiston that Patsy first began to fixate on her weight. She had been a “chubby” teenager and remembers that her brothers had teased her about it. “I worked with this woman who used to eat very little and I was watching her and I thought it was possible to do the same.” After some time Patsy stopped eating completely and eventually became dangerously anorexic. Her condition soon grew so serious that she was hospitalised after collapsing at a gym. While not conclusive, Patsy attributes her later battle to fall pregnant to her earlier anorexia and the damage it might have caused her body. She can’t recall the trigger but says that one day she just felt it was time for her and Neville to start a family. “I just suddenly thought that I would like to have children and Neville agreed,” she recalls. But falling pregnant didn’t prove easy and only after several fertility treatments, Patsy and Neville were finally expecting their first child. After nine years in Johannesburg, Neville was offered a job in Port Elizabeth and the couple returned to their hometown in October 1980. At 6:10pm on December 9, two months later, on a summer’s evening, their only son, Craig Carstens Schonegevel, was born at Sanford Maternity Home in Port Elizabeth.
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Patsy: L Ife
wIth
CraIg
2
Patsy: Life with Craig
i loved my Son the minute the nurses put him on my chest. Neville was there with me when he was delivered. And then they took Craig away and I just lay there. They seemed to have forgotten me and then someone, a nurse, I think, came along and said, “Are you still here?” I remember that during labour I bit someone on the arm; I don’t think it was Neville! It was incredibly painful. Afterwards I went home to the house we were renting because we had just got back to Port Elizabeth. I didn’t really have friends, so it was a quite a lonely existence for me. My mom had died but luckily I was very close to Neville’s mom, Ethel, and she was a great help in the beginning and it was good to have her nearby. After we bought our own home in Weybridge Park things settled down. From the start, Craig was a very colicky baby. He didn’t breastfeed easily and he just didn’t sleep through. Sometimes he would wake up 21 times during the night. We actually counted once. But I had this amazing link with Craig and I would find myself waking up a few minutes before he would. It was as if I could sense it. By then, I had given up teaching and was being a mother at home. Neville and I realised we weren’t going to survive not sleeping, so we moved Craig into our bedroom. Of course it was quite a thing moving him out later, but that’s another story. 5
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Shortly after he was born I noticed that he had this brown mark on his thigh but I didn’t think anything of it. His ear was a bit funny and I used to run my finger along it. Then about a year later the paediatrician noticed that more brown spots had developed and sent us to a skin specialist. The specialist mentioned something about this condition that I couldn’t even pronounce. He said the spots were known as café au lait spots because of their coffee-with-milk colour and that they were associated with this disease, Neurofibromatosis. Later, Neville and I went to see him again and he showed us photographs of people with this disease. He didn’t want to show us all of the photos. But he did tell us that it was impossible to predict what would happen and that you could have it without anything going wrong. On the other hand, it could manifest with serious or life-threatening problems. Craig had his first operation in 1982 when the paediatrician noticed that his testicles hadn’t descended. The only signs were the marks on his body. I decided to be positive about it and to trust that he would be okay. Once Craig had been diagnosed with NF1 we looked for support groups but there were none in South Africa. We eventually did find an organisation in England called Link (Let’s Improve Neurofibromatosis Knowledge) and we began to read up more and more about the disease. As Craig began to grow he seemed to be reaching all the milestones. I played educational games with him until they came out of my ears. He was a busy little boy, but one thing worried me – he didn’t crawl properly. He would sit and then pull himself up on a chair, holding on until he eventually learned to walk unassisted at about 12 months. I was concerned because I had read all the books on child development and crawling was an important developmental milestone. Eventually we took Craig to a little playschool when he was about three. He was very attached to me and didn’t like being there but he was an only child and he needed to socialise. I’d leave him there, my heart breaking, and then they’d call a little later to say he wouldn’t stop crying so I’d go and fetch him. 6
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Patsy: LIfe
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CraIg
Then one day we were at a children’s birthday party and I was talking to one of the other mothers while the children were running around. We were discussing Craig’s brown marks and I told her that he had something called Neurofibromatosis, which at that time people used to mistakenly call the Elephant Man’s disease. For many years medical science had incorrectly believed that Joseph Merrick, the Elephant Man, who was born in 1862 and also died at the age of 28, had suffered from Neurofibromatosis. Recently there has been renewed controversy about what he died from. Well, the woman was completely shocked and asked me if I had seen the movie about Joseph Merrick who was known as the Elephant Man. I hadn’t. Later I did see the movie and still remember her comments at the party to this day, as well as where I was standing and what the house looked like. This woman made me very afraid of what could happen. She told me about how disfigured people could become and that this Elephant Man had been put on show, like some kind of freak, for people to look at. Perhaps the conversation was good because it opened my eyes to what could go wrong. I was still thinking at that time that Craig would be fine. I went home that night and told Neville but we decided to move on, to get on with it, to be positive about Craig’s health. Craig had his second surgery when he was four and this was when his tonsils and adenoids were removed without any complications. Then I noticed that he was developing more and more of these brown marks. We were referred to a professor of dermatology at the Groote Schuur academic hospital in Cape Town where they did a biopsy on the marks. I remember Craig screaming when they did it. Craig developed a huge café au lait mark on his neck and then I noticed this lump on the left front of his head that just seemed to be getting bigger. I was petrified. We went to a general surgeon who told us that he would not personally remove what we thought was a plexifibroma engrained in the scalp. He felt the surgery was more suited to the work of a plastic surgeon should it become necessary. I started to get very concerned, wondering where this would all be going if that 7
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lump kept on growing. And then it started to become real to me that Craig was not a normal child and that things could go terribly wrong. And then they did. Craig would often complain that his head was sore. I used to put a wet cloth on his forehead and give him a painkiller. On these occasions, I’d put him down and he would suddenly projectile vomit. He’d want to lie down in his bedroom with the curtains drawn. He was clearly sensitive to light. I thought at the time: “This can’t be right, there must be something wrong.” Craig was attending a pre-primary school in Sunridge Park at that stage. He was never really happy going there on his own but we had to do it. One day the principal called us and said that Craig was not reaching the developmental milestones and that we should have him tested. We were later advised to enrol him at Cape Recife School, which catered for children with normal intelligence but with special needs. Craig’s speech was very nasal, and the kids used to tease him about it. Our first visit to the Red Cross Children’s Hospital in Cape Town was to have his nasal speech examined and although a plastic surgeon spoke about likely surgery, more serious medical problems overtook this impediment, which was to receive no further attention. We spoke to a general practitioner about Craig’s health who told us that he thought Craig was just “performing” because he didn’t want to go to school. But I instinctively knew something was very wrong. Then one morning Craig said that his bedroom light was spinning and later in the day the school called to say that Craig had developed a squint and that I should come and fetch him and take him to a doctor as soon as possible. There was a new paediatrician, Dr John Wickens, in Port Elizabeth who we had already been referred to but not yet seen. Neville was away on business in Johannesburg at the time and the next morning the three of us saw Dr Wickens. Dr Wickens must have spent two hours examining Craig. He asked him to walk on a straight line but he couldn’t. He phoned a professor at the Red Cross Hospital in Cape Town and told us that we had to get ready to go there immediately. 8
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Patsy: LIfe
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I can remember leaving the building with Craig and feeling utterly terrified. And that was when it started. They did this scan at the hospital and I can remember someone coming out and asking Neville if Craig ever had a discharge from his ear. I remember thinking that something was seriously wrong here. Then someone else came out and told us that they found a brain tumour, a cerebellar astrocytoma, and that it would have to be removed. It explained a lot of things to me: the headaches, the sensitivity to light, the projectile vomiting. But I just couldn’t think then when they told me that they would have to remove it. I knew that they would have to cut into my son’s head. We had to wait a while before the operation and Neville’s mom flew up from PE to be with us but had to return the next day. I just felt my whole world shattering. Neville has always been good with this sort of thing, very practical, and he talked to Craig. Explained to him that there was something in his head that needed to be taken out. Craig just accepted it. I tried not to show how frightened I was. I had to be strong for him. Craig was allowed to spend a day in Cape Town and we took him to a few places, like the World of Birds in Hout Bay, before he was admitted. But he didn’t enjoy it. He was too sick. We saw the neurosurgeon and he told us that he was going to operate, that it would be a delicate procedure and that it was not without substantial risk. If things went really wrong, Craig could even be paralysed or worse. I just remember saying to him, “I don’t care if Craig is paralysed or whatever, just see to it that he comes out alive because he is our only child.” You see, I had my tubes tied some time after we were advised by a geneticist that it was best for us to have no more children. Either one of us carried the gene responsible for NF1 or it was a mutation but there was no certainty. The surgeons reassured us that they would do their best. It was emotionally excruciating for me when we had to leave Craig at the hospital. He had never been separated from us. And when they had to take him through to surgery, Neville had to go with him. I just couldn’t do it. 9
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The LasT RighT
They told us it was going to be a very long operation. I was an emotional wreck. They told us not to wait at the hospital. We went away, had coffee and then came back again after about four or five hours. And then we went back in and waited outside the theatre. Your mind just races, you know. It was very good to have Neville there. He was very much a part of it. When we got back they told us the operation wasn’t finished yet, but the anaesthetist came out at some stage, he was taking a break, and he told us it was all going fine and that the news was good. He also said, with a smile on his face, that Craig had given him a hard time as his heart had stopped on a number of occasions. It was a seven-hour op in the end. And then Craig came out. I was devastated. He looked like this cocoon, his little head was heavily bandaged, and he was taken to the intensive care unit. The hospital was such a depressing place to be with all those sick children. I was relieved though that he was alive and that the op had gone well. So we sat with him there, spending the day with him at the hospital. I just remember feeling utterly exhausted. Numb and so, so tired. We spent days with him there in ICU and he had all these tubes and machines hooked up to him. I can’t remember too much now when I think back, but I do remember praying. Just praying. After a number of days they moved Craig to a general ward and the surgeons said I could stay with him at night. I was so tired I couldn’t do it. I regret that now. It was something I should have done as a mother. We were staying in accommodation near the hospital at the time. Then they started taking off the bandages, unwrapping his head and I remember looking at that wound. It was this huge scar at the back of his head. He looked so little with that huge wound. Soon after the surgery the surgeon explained to us that his decision not to put in a steel plate, where bone had been removed from the head, was controversial; but on balance this was what he preferred as a steel plate increases the risk of infection. But there was more bad news. They said something else was wrong with him as his blood pressure was far too high even on admission to the hospital. They couldn’t get his blood pressure down and he 10
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had to go for an angiogram. We went from the Red Cross to another hospital in an ambulance. They did the angiogram and discovered he had bilateral renal artery stenosis. Both the arteries to his kidneys had narrowed and Craig’s heart had to pump very hard to get an adequate blood supply to the kidneys. By that time I just thought, Dear God, we have just been able to get through this brain tumour op. At that time you feel as if your child is the only child in the world with a brain tumour. And we had just got over that and now this. How could this be happening again? I thought. The doctors we asked did not agree on where it was best to have the surgery done but it seemed as if local surgeons didn’t have that much experience with this very specialised type of procedure. We eventually decided that Craig should have the surgery done at the world-renowned Great Ormond Street Hospital for Sick Children, in London. I remember on the journey back from the Red Cross we stopped at a garage and I just went on my knees in the bathroom and prayed. We got home and were all shattered. Craig had to recover and afterwards, when he was a little better, return to school before undertaking the trip to London in March later that year. Earlier during the brain surgery, doctors had removed a part of Craig’s skull so he wasn’t allowed to do any contact sports and had to be very careful at school. The children weren’t allowed to bump him either so one of the school employees, a woman called Evelyn, was asked to accompany Craig outside the classroom for the first few months. Of course the children picked up on the fact that he was different and teased him. And then we received yet another blow. A week before we were scheduled to leave for London I detected a lump in my breast. My mom had died of breast cancer and this setback, in addition to the others, plunged me into a dark, dark hole of depression. It was a horrifying experience. I completely lost myself. I was trying to claw my way out of it but I couldn’t. They removed the lump and luckily it was benign. But I was finished. The doctors decided that I was not well enough to accompany Craig 11
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and Neville to London. And so Craig had to go with only his father. I wasn’t there for Craig when he needed me. I will always regret that.
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nevILLe: the Journey BegIns
3
Neville: The Journey Begins
i reCall PaTSy and me finalising accommodation arrangements for the two of us to stay in London while Craig was scheduled to have the first of two operations at the Great Ormond Street (GOS) Hospital for Sick Children. The idea was that we would stay close to Ormond Street, but this was not to be. Patsy discovered a lump in her breast and the surgeon she consulted felt that surgery should not be delayed in view of her mother having died from what started as breast cancer. There really was no choice as Patsy was at an emotional low and the risk of her becoming dysfunctional was high, even if she followed Craig and me to London some weeks later. Understandably she was heartbroken and I remember her saying that she was letting Craig down when he needed her most. Craig and I left for GOS in March 1989 and, fortunately, my parents were only too willing to leave their home in Humansdorp and stay with Patsy. Virtually overnight Craig’s world and my world changed drastically. Craig had a life-threatening complication and was separated from his mother with whom he had the closest of relationships. I was temporarily separated from my wife, my work and other important relationships. I think Craig, as an eight-year-old, was entering a situation that would unsettle most adults and I felt an 13
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increased degree of responsibility, love and empathy for him. I became his security and a father in a way that neither of us had experienced; so much so that on our way to London he told me how much nicer I was than I had previously been. In hospital Craig had his own room in a section for foreign children and a curtain separated his room from mine. My life became totally focused on his life and parents were encouraged to become involved in the care of their children. I made his breakfast, read him stories, entered the shower with him to ensure that he did not fall, removed the odd catheter and was at his side whenever there were medical procedures involved. I would inform him of whatever was going to be done to him, including many invasive procedures. I was determined not to mislead him. He trusted me and I admired his courage and exemplary behaviour. He related well to the doctors and other medical personnel and would, to their surprise, usually ask them how they were. We had been advised to take Craig to GOS on account of the complexity of his condition – bilateral renal artery stenosis – the narrowing of both the renal arteries. Relief for the left kidney was regarded as more likely to succeed if renal-artery reconstruction in the form of a splenorenal anastomosis was performed by a surgeon from St Mary’s, who had coincidentally grown up in what was then Rhodesia and done his medical studies in South Africa. The surgery lasted approximately eight hours. It entailed severing the artery to the spleen and joining it to the renal artery at a point beyond the narrowing on the side closest to the kidney. Craig recovered well and four weeks later we were on our way home to an emotional family welcome. However, before we left England, I decided to explain to Craig that we would have to return as he needed to have yet another operation. He took this news surprisingly well but did ask for assurance that it would be the last operation he had to undergo. Again, I chose the option of conveying the facts to him, even if it was in a slightly diluted form. 14
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nevILLe: the Journey BegIns
When Craig and I left for GOS again in June 1989, I knew that the reconstruction of the artery to the right kidney was going to be extremely difficult as the narrowing was up against the aorta of the heart. By this time Craig and I had got to know the surgeon well and he had developed a real interest in Craig. He frequently told me how he admired Craig and how exceptionally positive he found him. The required surgery was known as an aortorenal vein graft, which meant that the saphenous vein had to be removed from one of Craig’s legs and used as a replacement for the malfunctioning renal artery. As best I can remember, this surgery lasted approximately 12 hours and proved to be extremely challenging for the medical team. I chose not to have anyone with me while I waited for Craig to return from theatre and spent much of the time walking the streets close to the hospital. My link to Patsy and the family in South Africa was by way of a public telephone and I can well imagine the enormous strain they were under during this marathon surgery. Soon after Craig returned to his ward, I was told that it had been an extremely difficult graft to perform. However, there was realistic hope for success even if the probability was not high. My solace came from the belief that Patsy and I were doing our very best for Craig, and so were the medical team. I also believed that fortune and luck, if you wish, would at some point favour our eight-year-old. After some days of considerable pain, Craig started complaining, which was unusual for him, and finally I was told that the operation had failed. I do not recollect how I addressed this with him but I do have a vague recollection of telling Craig that one of his kidneys had to be removed and that this meant another operation, but that it would be fairly quick and not nearly as painful. I would imagine that my credibility was at risk but I do think that the surgeon and I succeeded in getting him to believe that he would get better if the kidney was removed. He was also told that it was not vital to have two kidneys. The removal of Craig’s right kidney required a fairly straightforward procedure known as a nephrectomy and this signalled his imminent 15
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release from GOS and ultimately a visit to Hamleys, the renowned toyshop. Before returning home we spent a few days with caring family in Marlow as this provided an opportunity for final monitoring and rapid access to GOS in case of emergency. Leaving Heathrow airport meant the end of an intense and challenging experience for Craig and myself. I gained even more respect and admiration for him and I think he developed the belief that he could trust me and rely on me.
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etheL: the drawer
under the
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4
Ethel: The Drawer under the Bed
Ethel Schonegevel, Neville’s mother, was 84 years old when her grandson ended his life in 2009. She is deeply religious and works tirelessly doing pastoral care for the Methodist Church in the small, picturesque farming town of Humansdorp in the Eastern Cape, about an hour’s drive from Port Elizabeth. you know, PaTSy iS like a daughTer To me. I have loved her from the beginning. It doesn’t happen that often that a mother and daughter-inlaw get on the way we do. Soon after they had got back from honeymoon this telegram arrived saying that Patsy’s mother was dying. That drew us very close together because after her mother died I became her mother. I have been with Patsy and Neville on this journey of Craig’s life. And oh what a beautiful little child he was! You would not have thought there was anything wrong with him. But we were over the moon at having this little boy in our family. When Neville and Patsy used to go away or take a break in Cape Town they would leave him with me. He loved it because in a way I was his second mother. Craig was never a good sleeper. He used to wake up quite a bit. 17
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Then he started to grow up and he was very woelig, which is such a lovely Afrikaans word for “busy” I suppose. We used to play Snakes and Ladders together, Ludo and card games. We cooked and we baked but I used to find that as soon as we start cooking then it was too slow for him, he wanted to get on to the next thing. We built sand castles and we fished in little pools. Patsy went back to teaching at one point and he had a little bicycle. They were living in PE and it was quite a big house in Weybridge Park, with a slope on the driveway down to the road. It was quite a busy road. Now Craig was determined that he was going to learn to ride that bicycle. But he can’t ride alone. I must push him and push him and push him and then I try and let go but he won’t let me yet. Eventually I decided it was my mission to teach this child how to ride on his bicycle. I knew it would mean so much to him. As you know, little boys have no fear and he laughs and he says, “Let go, let go” and he is just about falling and eventually I just let go for a little while and it was magic, he went on his own. It was a wonderful feeling. We went to all his birthday parties and Patsy really used to go to town with special birthday cakes baked in the shape of whatever was fashionable at the time. But I would always notice at the parties that all the other kids are playing rough, they are kicking balls and running around and things but Craig really couldn’t do that. His brain was completely fine, he was a highly intelligent child, but he just didn’t have the coordination. I would always take him to the school bus just a few streets away from the house. Patsy was teaching and I took him up. This was for preschool. I remember sometimes he used to come back and tell me he had these terrible headaches. One day Craig and Patsy came to visit my husband and me here in Humansdorp. He would say, “Shhh, you two are making too much noise. My head is very sore.” And then Patsy and I would wink at each other. We used to think it was just for attention. Then I’d take him to the room to lie down a 18
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bit. Then he lies for quite a while. Then he comes again and says his head is so sore. We didn’t realise that it could be something. It was a brain tumour causing this dreadful pain. Then one day they discovered he was crying in class. He had this terrible headache. They sent for Patsy. She and Neville took him straight to the doctor. There was no time whatsoever to waste. The doctor said they had to get on the plane that evening with the child and get to Cape Town to the Red Cross Hospital. They were there for a long time. I flew up for the day before they did the operation. We were all just praying. And then the day they came back they stopped in here at my house. And I watched as this little cocoon got out of the car. I can only describe him as a cocoon because he was so bandaged up to the top. He was the first to get out of the car and he said, “Nana, I never want to go back to that terrible place.” And I said to him, “You won’t have to, it’s all over now.” He got so many toys then. I got all these toys, some of them on appro, for him to choose. And then he went home, but things didn’t go well for Patsy. She was very fragile. My husband and I would go there for weekends. I had a wonderful husband but a husband who could not find the bread tin in the house. He didn’t want to stay over in PE and wanted to come home so I had this tug of war. I told him that I wasn’t going to leave Craig now and that Neville had to go to work and that Patsy was battling very badly. She went into a very deep depression. “I need to keep things going for them,” I said. She just went to her bedroom and stayed there. I can remember a minister who I knew from Humansdorp came to see her. She was upstairs in her room and she used to trust me with everything. She used to tell me, “Mom, I don’t want people up here, only you.” I had to deal with her medication. I made a chart. She had to take 15 tablets in the morning and mark this all off and be responsible and make sure it was all correct. 19
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And while the minister was present, I was sitting on the one side of the bed and she was lying in it. He looked at her and she looked at him. And then he asked her, “So, how are you? Are you the hell in with God?” And she just looked at him. And he told her she had every right to be the hell in with God and that she should give Him a good telling-off. He said she could use any language she liked with Him, tell Him He was unfair and just let it all run out. That was such an eye-opener to me. I used to do some counselling and later I used the same method. And then he got onto talking to her and said, “But now you tell God you are sorry for what you said but will God please explain to you why you needed to have a child that was so sick.” And then he spoke nicely to her and told her to calm down and then he would leave. The next time he would come with something else and I thought that was so good to let her get rid of that anger. A lot of what we were doing was trial and error. I also didn’t always know how to handle the situation. Sometimes we would have this perfect weather and I would go up to the room and Patsy would be in the double bed. I would take her morning tea and her medication up to her. The curtains would be drawn and it would be pitch dark. I’d pull open the curtains trying to get it open and light. That was when Craig and Neville were in London while he was there for his kidney ops. I would go in and I would say, “I have brought you your juice.” I would know what kind of a night she had had as I am up a hundred times in the night to use the loo and I heard her walking in the passage. Then one night she stood in front of my door and she said, “Mom, I see lights out there.” And I got up and went to look and you know, I saw that light. And we never saw that light again. To this day I believe it was God’s light and that he showed us “Don’t worry, Craig will get through this op okay.” It was God’s light because when we looked again, that light was gone. And there was no place where this light could have come from. 20
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Every day I would try. I would go into the room and open the curtains and say, “It’s a beautiful day out, come stand here at the window with me.” Later I learned after talking to the psychologist that I must not do that. That I should not fight with her and try to make it light. Because she was all dark. She was pitch dark inside and it made it worse for her because why must I see the light and she can’t? After that I didn’t do that any more. I waited until she was in the bath, more tactfully, just gradually opened the curtains a little bit. Because when I came in again she was back in bed, blanket over the head, sheet over the head. And I thought of Neville at the other end and what hell he was going through. He had to look after Craig. He cooked for him, did his own laundry, and had to be with him in the shower. But thank God we had my husband’s brother overseas and his grown-up children and they used to go and relieve him and one of them or two of them would take Neville off to a restaurant. Go and let him eat and just breathe a bit while the other would sit with Craig. I wrote these stories for Neville to read to Craig every day. Neville said he was not good at telling stories so I wrote them. And you know how I wrote them? Under the blankets with a torch because my husband and I were in the same room, in two single beds, and he used to moan if I had the light on. So that is how I wrote all those stories. We didn’t go over to London. My duties were with Patsy. But my husband couldn’t handle it; he just wanted to go home. He couldn’t even make food. But I told him, “You have to stay with me. I need you here.” Eventually he stayed. Then Neville came home with Craig and I remember us going to the airport to meet him. Neville’s bosses sent the most wonderful things. There was this massive teddy bear waiting. And there were Neville and Craig lugging these things along. Patsy was very excited about their return and before they arrived she said that we had to prepare a feast. But it was not a good thing we had done because Craig was on a diet. But we didn’t know. He was never a good eater. We always battled to get him to eat. I 21
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spent my life telling stories to get him to eat – “down came the bird” or “open the garage”. He wasn’t a robust child, not a fat little boy. But we were so looking forward to having him home. He had these huge, terrible scars all over his body. Down the front a big cut and all around the side to the kidney. Oh Lord, what that child went through. And he just took it in his stride. But Patsy couldn’t take it. She didn’t want to see those scars. It was agony for her. I could see it when she saw him undress. And she couldn’t touch him. And the psychiatrist said to me that Patsy must bath him and not me. But she couldn’t. It just got worse and worse. She eventually wasn’t eating at all. She would not come down from the room. Craig used to ask where his mom was and I would say that she is sleeping. He would go up to the room to see her and she would try to play and do little things with him but she would soon be exhausted. I was hurting so much. I couldn’t force her to do those things when I knew how it must feel for her. So then the psychiatrist and Neville and Patsy spoke openly and they all agreed that she needed to be admitted. There was no facility in PE, so she went to Cape Town. Now Neville is alone with the child and I am here in Humansdorp with my husband. There was no real decision to make; we had to go and stay with the two of them. And he asks, “Where is Mommy?” We had to say, “Mommy is sick and Mommy is going to get better and she will come home soon.” Fortunately a child doesn’t realise how long it is. And we stayed, my husband and I. And every few days he’d say he wants to go home. I felt so sorry for Patsy and for Neville. Patsy had become part of me. She has never been a daughter-in-law to me. She is so good to me and I adore her. I tell you that time was hard but it made me strong. God made me strong and I could pick up again. So, here we had this little mite in the house. And then while Patsy was away at the hospital, family from my husband’s side came out to visit us and I thought, This is now not a good time to have people, but it turned out fine. 22
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It was his brother Mervin and wife Mary and her sister and husband. Neville and Patsy lived in a big house. They both like space. So, we had these visitors in the house. And for me it was hard. We stayed for a long time and Patsy would ring in between and say she wanted to come home. I told her to hang on just a bit longer. I used the excuse that there were people in the house and that it was full, but I knew she had to stay for longer. Neville and Craig went to visit her in Cape Town once for a weekend. I made a little bed in the back of the car for Craig and off they went. I think Neville also went on his own on a few occasions. Craig used to keep me very busy. We would make those little calendars, like the ones you use for Christmas, where you would open each day and there would be little presents. We were counting down the days to the time his mom would come home. Every morning he would be so excited to open it and sometimes he would get a chocolate and sometimes a coin. But in the meantime things had to get back to normal. Neville would go to work in the day and Sarah and I would be with Craig. I think we ended up staying a large part of the year. Craig had to go back to school. At the time skateboarding was a big thing. And all the boys had skateboards and they asked him if he had one. Now part of his head had no bone in it. And it was treacherous for him. What if he falls? Then Neville said we can’t wrap him in cotton wool, what are we going to do? We got him a skateboard and a helmet and all these things and we took him to this place where all the boys were skateboarding. But his balance and coordination were poor and he never managed to skate. He’d watch with envy, I think. Craig had this bed in his bedroom with this drawer that you could push in underneath. It was a big, long drawer. In the end it became for me the place where all the hopes Craig cherished were hidden. Things like the tennis racquet and takkies he got when he wanted to play tennis. Craig had very bad coordination and he’d go for one or two lessons 23
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until the coach would tell Neville that he can’t do it. And Craig begins to feel inadequate and so into the drawer the racquet goes. Then the rugby ball and the sports clothes. All of these things he tried to master. Craig desperately wanted to succeed and he never gave up. That drawer just filled up with all of these useless things. And then the golf thing started. He was very good at that and it was such a good thing for him and for us. Neville and Craig could play golf together and this gave them time to bond. Craig was an incredibly generous child. You know, when he was little, I would pack his lunch boxes for school and he had to have a fruit and a couple of biscuits, one sweet and his sarmie. And then he would always take an extra sweet for another child. He was always, always concerned about anyone who was left out or the poor and the have-nots. Anybody who came to the door had to be given something. And one day this old man came twice and I just felt he had been given what he wanted and why is he back and Craig says, “But he could be Jesus. You must not send him away. You must give to him.” Where does that come from? His mother was a Catholic and she has always been religious. Neville is the best child, cleanest living man, the kindest man, the giving-away man, but he jokingly says boarding school killed religion for him. He does not want to go to church. He goes on special occasions and I just leave it alone. When Craig was 18 he said he wanted to learn to drive. He wants a car. It was his great delight and he was very proud. I was very proud of him. And he would call and say, “Nana, I want to drive you somewhere.” He was the most precious child.
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