The Last Right

  The Last Right

  The Last Right

  Craig Schonegevel’s Struggle to Live and Die with Dignity

  Marianne Thamm

  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

  © Neville Schonegevel Family Trust, 2013

  All rights reserved.

  ISBN 978-1-4314-0762-0

  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 9.5/15.5pt

  Printed and bound by Mega Digital (Pty) Ltd., Cape Town

  Job no. 001979

  See a complete list of Jacana titles at www.jacana.co.za

  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

  Contents

  PART ONE

  Preface: The End

  Introduction

  1 The Beginning

  2 Patsy: Life with Craig

  3 Neville: The Journey Begins

  4 Ethel: The Drawer under the Bed

  5 Who Am I?

  6 Overcoming Obstacles

  7 Deciding to End It

  8 Why?

  9 My Son

  10 Loose Ends

  11 George Irvine: Sacred Turf – Encountering a Mystery

  12 Sandy Coffey: Bosnia or Mauritius

  13 Not Quite Yet

  14 Craig: In His Own Words

  15 Ethel: Go with My Blessing

  16 Sarah: My Second Son

  17 Surviving Craig

  Acknowledgements

  Epilogue

  PART TWO

  1 What is Neurofibromatosis?

  2 The Law

  3 Legal Reform and Clarity

  Part One

  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

  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 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

  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, Neurof
ibromatosis type 1 (NF1, also known as Von Recklinghausen disease), he forfeited his “good passport” and took up a reluctant 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.

  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 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 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 organisa
tion 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 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 stage where I may very well have to use it, 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.