The Last Right

by Marianne Thamm

  I recollect the sadness I felt for some time until I could believe that they were going to live. Other animals died on the farm but they were not mine and I do not remember experiencing the same emotions.

  At about the same age I attended a funeral for the first time when the lady who washed the laundry for a number of farms died. I am unable to recall my emotions but do remember that one of the farm owners addressed everyone. I remember asking my parents about this afterwards, and it still saddens me when on infrequent occasions I think about that funeral.

  In a way I was introduced to death gradually over the years when my grandparents and later my father died. My perception was that they were old and had led a full life, making it relatively easy for me to accept.

  We lived with Craig’s emotional and physical pain over many years and, for whatever reason, I believed that he would continue overcoming the life-threatening obstacles he encountered on the journey he was on.

  The fact that he came to the insight that his quality of life and future prospects were such that he wanted to end his life, was understood by me. But I nevertheless was deeply shocked by him wanting to commit suicide no matter what form it was going to take. I remember having a very lengthy discussion, one Sunday afternoon, with one of the medical specialists who knew Craig’s complete situation, to try to come to terms with this fact.

  I found Craig’s explanation rational as to why he wanted to go to Switzerland for assisted suicide, and although I always regarded him as an exceptionally brave son, I do think the fact that he was unmarried and without children made the decision a little easier for him.

  On reflection, I realise that I started mourning Craig’s decline and ultimate death long before he left us. First he stopped playing competitive golf and later stopped playing altogether. Then he qualified as a personal trainer and accepted an invitation to join someone else in a business venture, only to come to the insight that he was not going to cope.

  Even though I did not know that Craig would be ending his life, it was as if he was shutting down and I was saddened that I would be unable to play golf with him again, nor see his good golf swing or witness him fulfilling his ambition of helping others who needed to be assisted by a personal trainer.

  This, together with the fact that he and Patsy were spending more and more time with each other (perhaps to deal with their grief), meant that I was unconsciously being prepared for a final and lasting separation. And so I view my grief in this light.

  It has also become clear to me that people grieve in their own unique way and that they should be allowed, if not encouraged, to do so. Whether one cries or not is not right or wrong, nor does the duration and extent to which one grieves indicate how much one loved the deceased. I think that if differences in this regard simply fester on without being addressed, the probability of serious damage to a relationship is high.

  The theoretical stages of grief are well documented but do not necessarily follow a particular sequence, nor does one stage necessarily pass before another begins. Evidently, more recently a view has also emerged that the bereaved experience a number of feelings rather than progress through stages. In my case I do feel that I had an opportunity to say goodbye to Craig and perhaps this helped me to accept his death. I can still feel the long hug he gave me hours before he committed suicide, and I remember his last words even though I was not sure that it would be the last time I saw him alive.

  I have not had the feelings of denial that Patsy seems to have experienced and it was as if I wanted people to know that Craig was dead. At least I would not have to tell those who spoke to me about him without knowing about his death.

  The death notice was written by Patsy; my only wish was that the fact that he had taken his life should not be concealed, which it wasn’t.

  I do think that all this helped me to accept Craig’s death with little denial.

  Other strong symbols or signals of Craig’s life and death, and which give me strength, are a hexagonal bench, used by many, around a white stinkwood tree which I see every day at my place of work.

  The plaque on the bench simply reads: In memory of Craig Schonegevel. 09-12-1980–01-09-2009. Elsewhere in a large garden we have planted an ironwood tree with a similar plaque mounted beside it. A runner whom Patsy and I know tells me that when he returns from his daily run he always pauses at the tree.

  Then there is also the Pier at the Hobie beachfront in Port Elizabeth from which we released Craig’s ashes and which I visit occasionally for some personal and peaceful thoughts.

  At times, I still do experience some feelings of guilt about whether I should have responded differently to Craig’s decision to end his life. However, the overriding feeling is one of clear acceptance that I acted in Craig’s interest.

  This belief gives me peace and strength. I am unaware of experiencing strong negative feelings other than anger with Dignitas. Their written answer, informing him that his application had been unsuccessful, arrived a day or two after his death. Taking all factors into account I fully accept the decision taken by Dignitas, but I remain convinced that they took too long with their final answer.

  For us as a family it was a case of whether Dignitas, the only organisation that assisted foreigners, would give Craig the so-called “green light” or whether he would be taking his own life with all the horrid potential dangers and consequences associated with unassisted suicide.

  I have often been asked how I coped and remained functional throughout. In summary, I would say the following has played a role: the fact that Craig fought a gallant fight for survival and the pain and suffering he was experiencing would only get worse. It was Craig’s very clear wish to end his life from the time he applied to Dignitas for assisted suicide in early 2009, and I believe he was of sound mind at the time. We also experienced strong support from family and friends.

  What also helped is the belief that Craig had been freed from pain and minimal quality of life. And that the lessons learned during his lifetime helped to equip me better to recognise and assist others who are experiencing heartache and trauma.

  Acknowledgements

  CRAIG, IN AN EMAIL TO SANDY, expressed the wish that his book contain the following dedication:

  Mom – You have been my softness, warmth, comfort, shelter, calm, grace, sustenance, fullness, peace, fighter, heart-understander, love of my life.

  I truly would’ve “gone” so long ago if it was not for your soft heart. Nobody ever did understand our bond. It could never be broken, and I know that it never will be. This book may give some people a touch of insight into our connection, but it will be merely that, a touch of insight! I have been so privileged to have experienced this intense love, this constant, unbreakable love my entire life, from day one. Not many people are so fortunate to have experienced, to have lived such a life of constant love. I love you with every fibre of my being and I will wait anxiously for us to be reunited in a place of constant peace, peace that we have never known.

  Dad – Dad, for living the life the way you always have! It was a lesson to observe the wonderful ways of how you live: of your morals, your manners, support, loyalty, unselfishness. Thank you for loving me “enough to let go”; it is the ultimate gift of love. Thank you so much for bestowing that upon me. If I could do it all again and choose any man in the world to be my father, it would be you. If I managed to display even a touch of your many qualities in life then I think it would be a true achievement; I will wait anxiously for you Above.

  George Irvine – You truly are all that I imagine God to be. Words cannot express my love for you. You are one of the very few that I love intensely, wait anxiously with open arms for you.

  Sandy Coffey – Words cannot express the love in my heart for you. I harbour a very deep place for you. Little did I know when I met you a little while ago the beautiful friend I would come to know. Thank you for being one of the very, very few who totally understood me, my heart, spirit. Thank you for all that you did, all that you
are doing and all that you will do. I love you intensely, wait anxiously Above for you.

  Quinton Gilbertson – My cousin! I wish I had known you better. I have seen your beautiful heart. Thank you for all you have done for me, for all you are doing and all I know you will do. I will “travel” with you on that day [of the next London Marathon] and all I can offer is a mere breath in your sails; as you are a strong man I will travel on your back and can only offer you that, a mere breath.

  Uncle Brian – My uncle, my godfather. I have seen your heart for the longest time; it is soft, and it is beautiful. “The Godfather” will always be my signature cocktail. Thank you for that visit, that drink! It will sustain me until the day we can have another one together.

  Nana – You are a beautiful soul. Thank you for being there since the beginning, for your loyalty, for your understanding! I love you.

  Epilogue

  WHAT WOULD IT HAVE BEEN LIKE for Craig, his parents, his family, his friends and those who loved him had he been allowed to die as he wished: legally, without any additional trauma, in his own country and with his mother’s and father’s arms wrapped around him?

  How different an experience might it all have been had Craig and his family been able to access a range of professional services – psychologists and other medical specialists – and who might have advised and guided them through the various stages of the trauma?

  Craig ended his life in a harrowing manner – alone, at home, in his bedroom, terrified that the second attempt might also fail and that he might be left alive, his health even more compromised than before. Dealing with the uncertainty and the possible illegality of his actions and how this might affect his parents could not have contributed positively to his spiritual state, no matter how hard he had tried to prepare for his death.

  And so, we can only imagine how his last moments might have been consumed by anxiety and fear rather than be filled with the serenity, peace and acceptance he so desired and deserved.

  Is it right that someone like Craig, a rational individual who was living with an extreme form of an incurable condition, be denied the right to self-deliverance?

  It is these questions we must ask as 21st-century people who are able to imagine the present and the future where medical science is able to sustain and prolong life in otherwise unviable conditions. The changing medical landscape requires a concomitant re-examination of the moral, philosophical, legal and ethical frameworks and landscapes that shape and guide life’s bigger questions and dilemmas.

  The empowered patient, the patient who has a right to his or her medical records, to give permission for specific procedures or to decline such interventions is a late-20th-century phenomenon. In the past, medical professionals were viewed as “gods” and their decisions were often taken without consultation or concern for the patient or the “sanctity” of life. Today, at least in most democratic societies, we live in a much more complex and sophisticated milieu when it comes to medico/ethical issues and it is time for the last hurdle – that of euthanasia and assisted suicide – to take centre stage.

  In an essay on the right to die published in the New York Times* in 2007, writer and lawyer Ronald Sokol imagined a constitutional amendment that guaranteed “every person the right to die with dignity; this right shall include the right to choose the time of one’s death and to receive medical and pharmaceutical assistance to die painlessly. No physician, nurse or pharmacist shall be held criminally or civilly liable for assisting a person in the free exercise of this right.”

  Sokol suggests that within the next half-century, or perhaps sooner, the right to choose to die with dignity will be as widely recognised as the right to free speech or to exercise one’s religion. He also imagines it will no longer be called euthanasia or mercy killing and will be viewed as “a fundamental human right”, as expressed in the proposed amendment to the US Constitution.

  Craig Schonegevel is not alone. While his is a story of prolonged ill health, suffering and courageous but traumatic self-deliverance, there are many more South Africans who suffer daily in silence and who long for succour.

  Since its launch in 2011, Dignity SA has received numerous letters from desperate South Africans needlessly suffering with no way out. One example is a plea from 31-year-old Katharine Hannah posted, with her permission, on Dignity SA’s website. It is reproduced here verbatim.

  My name is Katharine Hannah, I am 31 years old and terminally ill with three brain tumours from metastasised breast cancer diagnosed in 2009, which I fought bravely, as there was hope.

  Unfortunately despite registration some months ago, Dignitas Switzerland were not able to help me before I became too ill to travel without a medical support system such as the one I have in Knysna where I am currently living with my mother. I have no partner, no children, no job since diagnosis and no reason to prolong my life. I do not wish to let nature take its course, as after some 3 months my life is already unbearable. I am going blind, suffer bad intermittent headaches controlled by massive doses of cortisone which has destroyed my health in other ways, I have terrible and constant nausea, and I have spent the last few months in my bedroom with the curtains drawn. I wish to die sooner rather than later. I am hoping that you can offer some advice as to how I can end my suffering. What options do I have in South Africa?

  For now, there are no options aside from palliative or hospice care, and even in these circumstances patients who are terminally ill and in pain are often not able to access necessary and vital pain-relieving medication. According to the Global Access to Pain Relief Initiative (GAPRI),* a joint programme of the Union for International Cancer Control (UICC) and the American Cancer Society (ACS), in 2009, at least 200 000 South Africans died while suffering moderate to severe pain, 111 307 of them without receiving any treatment for it.

  GAPRI calculated the figures using South Africa’s cancer and HIV/Aids death statistics and these do not include other causes of death such as traumatic injury, death in childbirth and other fatalities. The organisation has calculated that the number of cancer cases is expected to double over the next 20 to 40 years and that by 2030 there will be 26 million new cancer cases and 17 million cancer deaths per year.

  Some of those who argue against euthanasia and assisted suicide often suggest there is no need for it as the palliative care options at the end of life provide adequate relief, but it is clear from GAPRI’s research that this is far from true.

  For several years now, Dr Liz Gwyther, CEO of the Hospice and Palliative Care Association of South Africa, has been lobbying for proper assessment and management of pain in healthcare institutions throughout the country. She has also lobbied for better management of morphine stocks for clinics, hospitals and healthcare facilities, as the opiate does feature on the Department of Health Essential Drug List but is poorly managed and is unavailable in many institutions. The result is that thousands of South Africans die needlessly painful deaths because of ignorance of pain-relieving medication and an unwillingness by some doctors and health workers to expose themselves to possible legal action.

  The need for clear end-of-life decision-making must of course not be confused with the challenges and problems facing those who require palliative care, but the issues are intertwined in some way. Legal clarity would set deliberate medical and ethical parameters for those individuals, like Craig, who choose, voluntarily and under no duress, to end their lives with dignity. Those individuals who are opposed to euthanasia and assisted suicide are free to not choose this as an end-of-life option.

  As Professor Willem Landman has suggested: “Medical decisions about life and death are controversial, involving some of our most treasured personal and religious beliefs. Still, controversy does not justify unexamined acceptance of the status quo.” He correctly asserts, “Dying is a natural and inevitable part of life. Unless we die an unnatural death, we will go through a natural dying process. For some it will be peaceful and dignified; for others it will be filled with pain, distress and s
uffering. We do not know which it will be.”

  Craig knew and could foresee his future, the pain, distress and suffering it would bring for him and his parents but was denied the right to die with dignity.

  It was his wish that his life and death would somehow help to rekindle the debate in this country and in so doing provide those who have the same wish with the opportunity of fulfilling it when the time comes.

  Part Two

  1

  What is Neurofribromatosis?

  The following information is published with the kind permission of the Neurofibromatosis Foundation Association, UK.

  NEUROFIBROMATOSIS (NF) is a collective name for a group of genetic conditions that affect the nervous system. NF causes benign (non-cancerous) lumps to grow on nerves. These lumps can grow on nerve endings in the skin where they can be seen clearly; the lumps can also grow on deeper nerves within the body.

  Neurofibromatosis occurs all over the world in all races. It affects men and women equally.

  There are two main types of Neurofibromatosis: Neurofibromatosis type 1 (NF1) and Neurofibromatosis type 2 (NF2).

  They are two completely different and separate conditions. People who have NF will have one type or the other. NF1 cannot change into NF2.

  NF1 is a common genetic condition. A genetic condition is one that can be passed on in families. Approximately 1 in every 2 500/3 000 people is born with NF1. Many people with NF1 will be affected very mildly and may have nothing more than skin changes.

  A minority of people (about a third) who have NF1 will have health problems linked to the diagnosis at some time in their life. Some of these problems will be mild and easily treated, while others will be more severe.