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  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.

  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 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 “god-given” 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.

  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

  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.

  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.

  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 extra-mural 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 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.

  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.

  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.

  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.