The Last Right Read online

  “Then one night we were watching television together and I looked at Craig and the front of his shirt was just this bloody mess. It was terrible. It looked like blood was just pouring out of him,” recalls Patsy.

  The family rushed back to the emergency unit where a radiologist performed a scan and discovered that a vast amount of blood had collected in Craig’s abdominal cavity. Suddenly a physician’s earlier remark that Craig had lost an astounding amount of blood during the operation but that he had been baffled as to where it had “gone” made sense.

  Craig was readmitted and the haematoma drained. Craig, Patsy says, was exhausted and this turn of events put an immediate end to his attempt at living independently. He also had to abandon his plans to open a fitness centre; his world shrank once again.

  “That episode, I think, was the beginning of Craig deciding to not fight any more. I am sure of it,” she says.

  Craig’s ill health continued into the New Year.

  Months of taking laxatives to prevent blockages had led to chronic diarrhoea and the development of painful haemorrhoids that required surgery. So, in 2008, he found himself back in hospital.

  Then in September doctors removed three benign tumours: one above his left ear (which was a fibroma), the other on the left side of the back of his skull (a schwannoma) and one in his right foot that caused painful post-operative complications.

  Two months later he was admitted again for another major surgery: a second laparotomy, which entailed reopening the abdominal wound so that an enterocolostomy – the surgical joining of the small intestine to the colon – could be performed. Several adhesions and two obstructions from his distal ileum (the lower portion of the intestine) were also removed during this operation.

  Each new surgery, says Patsy, was like a body blow to her son. She could see the hospitalisations were draining the life out of him and he began spending more and more time at home trying to recover, his energy depleted.

  Over the years, the routine in the Schonegevel household had changed according to the dictates of Craig’s health. He had always enjoyed going to gym, even as a teenager, and would often leave home at 5am for at least an hour before returning to have breakfast with his parents.

  While Craig was very much a homebody, between his teenage years and early adolescence when he was relatively well, he enjoyed weekends away with his parents and relatives, solitary walks with his dog Hogan and jogging or swimming in the ocean just off Shark Rock Pier on the beachfront at Hobie Beach.

  He would usually spend afternoons diligently working on various assignments and tasks related to his studies and, when he was healthier, playing his regular round of golf on Wednesdays.

  In fact golf and golfing was the one area in Craig’s life where he was able to excel and feel a sense of accomplishment in spite of his impaired motor skills. His talent was first revealed at an early age when he showed an interest in playing with a set of plastic golf clubs.

  At around the age of 11, Rodney Boy, a family friend, began giving him lessons. As he improved, Craig began to take lessons with Graeme Whale, a golf professional at the Port Elizabeth Golf Club.

  Whale, who was to become a family friend of the Schonegevels, was amazed at Craig’s discipline, which resulted in his making the Eastern Province Under-15 team for two consecutive years.

  Whale realised that Craig’s poor spatial perception was limiting his putting. Craig had difficulty seeing up or down hill or right or left breaks and instead “read” the greens with his feet or measured distance by pacing it out.

  Once again, Craig set a high standard for himself, but his physical limitations frustrated him and he never quite gained complete confidence in his golf-playing.

  Craig and Neville had also enjoyed playing golf, either together or with friends, most weekends, but these outings tapered off as Craig’s body began to limit him even more.

  Religion and faith were important to Craig and Patsy and mother and son had joined a local church in 1994. Craig had also joined a youth cell in the church and found some community and comfort in the weekly meetings he attended and enjoyed the company of other young people.

  However, a confrontation at one meeting had completely disillusioned him. Craig had felt safe enough to open up about his health but someone in the group had suggested that he had been born with NF1 because Pasty and Neville were “cursed”. This view apparently enjoyed the general support of the group.

  “Craig came home absolutely shattered. He could not believe that Christians could say this to him,” Patsy recalls.

  Craig accompanied Patsy to a meeting with the minister in charge to discuss the incident.

  “I don’t think that he was too perturbed by what had happened but said that he would speak to the person running the cell group. I told him that he was allowing a cell group to be run in the form of a sect and that Craig and I would no longer be members of his church.”

  They both later joined the St Cuthbert’s Anglican Church and attended regular services there.

  After Patsy stopped teaching in 2004, mother and son would often spend afternoons either out shopping for the evening meal or clothes or going for a stroll on the beachfront. They both enjoyed coffee shops and would often sit together sampling various options on the menu.

  Patsy would often scout out potential romantic possibilities for her son – a cute waitress in a restaurant or a cashier at a pharmacy – but they too more often than not came to naught.

  While Neville usually worked long hours, Craig and Patsy settled down in the lounge after supper, reading or watching television and series such as Friends, which was Craig’s favourite. As his health deteriorated, Patsy and Craig became more insular, spending more quiet time at home and often napping together in the afternoons.

  Craig, it seemed, was turning inwards. He had begun to slowly lose all interest in many of the smaller pleasures – including taking his granny out for drives in his car – that had once brought him some joy. Neville and Patsy saw considerably less of their wide circle of friends and Neville found this regretful to the extent that he would accept invites from friends on his own.

  Craig found enormous comfort in music and had over a thousand songs on his iPod. He particularly liked The Corrs, the English singer-songwriters David Gray and James Blunt, Damien Rice, Chris Rea and Chris de Burgh. He enjoyed groups such as Watershed, Coldplay and the Travelling Wilburys. His classical music taste ranged from Bach to Mozart, Vivaldi and Beethoven, and he also enjoyed the light opera of performers such as Andrea Bocelli and Zucchero.

  Craig was very keen on music and badly wanted to learn to play the guitar. He started acoustic guitar lessons with music teacher Dr Howard Nock in mid-2007. The teaching stopped towards the end of 2008 as a deeply seated and increasingly painful tumour in the muscles of his left arm took its toll.

  In early 2009, Neville and Patsy were watching television when their son strolled into to the lounge after spending much of the evening hunched over his computer.

  “He stood there and he said to us, ‘I think I’ve found my peace’,” Patsy recalls.

  His parents were puzzled. When they asked Craig to explain what he meant, he told them that he had found a clinic in Switzerland, Dignitas, which, under certain circumstances, helped people to die “with dignity”.

  Dignitas is the only organisation in the world that offers foreign nationals this service and requires them to become members by paying a registration fee of 200 Swiss Francs (about R1 757) and a “membership contribution” of 80 Swiss Francs (about R700). Then there is an additional fee of 3 000 Swiss Francs (about R27 000), described as a “special membership contribution” and which covers “the tasks we carry out” but which does not guarantee that the applicant will get the “green light”.

  “At first I tried not to react. It was a hell of a shock. I couldn’t believe he was actually thinking of ending his life,” says Patsy.

  Neville was disturbed by the announcement but decided to remain ca
lm. He decided to let Craig entertain the idea as a way of dealing with how low he was feeling at that point.

  “I didn’t think it would come to that. I thought that on the health side things would improve. He had had such a bad run of obstructions and I hoped that his luck would turn and he’d get a break.”

  Neville reckoned that Craig had fought so bravely until then and that this was part of a process.

  Pasty could not at first come to terms with Craig’s decision but felt that her support would provide him with a measure of peace in the meantime.

  “But I sat with him on the bed one day and I said to him, ‘Craig, please don’t do this’,” she recalls.

  Craig had responded that if Patsy didn’t want him to end his life he would respect her wishes. But, he added, she would have to bear some responsibility then for the pain and suffering in his life that was bound to escalate.

  “I told him I could never do that to him. I could never stop him. Eventually I had to learn that the greatest love we can give someone is to let them go.”

  After Craig had discovered Dignitas he became more and more focused on ending his life. Patsy remembers how surreal everything felt the day Craig went to the bank to make an international transfer to Dignitas to become a member.

  “I needed to go somewhere and while driving in the car I was amazed that the world was just going on around me as if nothing was wrong,” she recalls.

  Neville, while he was coming to terms with Craig’s decision, held on to a vague hope that his son would change his mind. Somehow word had got out in Port Elizabeth and Craig’s past paediatrician, Dr Wickens, contacted Neville and they decided to meet and discuss events that were unfolding in the Schonegevel household.

  “We met in a hotel and we spoke for three hours. In those three hours he told me that in his opinion suicide was not a way out. He also said that he didn’t feel the decision was entirely up to Craig and that if I felt even remotely differently, it was my duty as a father to try to dissuade him from making this tragic decision,” says Neville.

  In response, Neville suggested that he and Craig watch a documentary about a young musician suffering from cystic fibrosis who was dealing with it and living his life.

  “I know he probably took it the wrong way, that he thought that I was criticising his decision, but I didn’t mean it that way. I wanted to show him that there was always hope. I am an optimist,” says Neville.

  Craig also wanted to be certain he was making the right decision and vowed to find out more about where the NF1 was most probably leading. The family consulted Dr Gerrie Steenkamp, Craig’s general surgeon and coincidentally an occasional golf partner of Neville and Craig.

  Neville recalls the meeting: “Craig wanted Gerrie to explain to him, in all honesty, the future of his adhesion-related problems and he was particularly worried about the pain he experienced. Gerrie, in his usual gentle manner, said it was highly probable that there would be more obstructions and severe pain and surgery. At that exact moment I sensed Craig’s hopelessness and that all the fight in him had subsided. Yet I left the consultation feeling relief that Gerrie had given Craig an answer that was honest and credible. I felt I needed to back off the position that I was keeping, one of optimism and endless hope. I finally decided that I would give Craig my unconditional support in his quest to end his life. Something fundamental shifted in me after that.”

  Craig had spent many nights with his bedroom door shut, writing in his diary, which he had hoped would later form part of a book. Patsy and Neville supported the idea but realised he might not be able to complete the task on his own. It was then that they sought outside help and were put in touch with Sandy Coffey, a well-known feature writer and accomplished professional photographer in Port Elizabeth.

  After the family had met with Sandy they agreed that she would document his life in photographs as well as conduct a series of interviews with him. Craig came to look forward to these encounters with Sandy, which allowed him to freely explore the drastic choice he was about to make. They frequently met, either at the Schonegevels’ home, coffee shops or the Radisson Blu Hotel on the beachfront where Craig enjoyed one of his few indulgences, a cocktail called a Moscow Mule.

  Apart from his parents, Craig had no one else he trusted enough to really open up to, but Sandy offered him another welcome “soft space”. Her relationship with Patsy and Neville also offered them a welcome neutral space to come to terms with the consequences of their son’s decision.

  While Craig benefited enormously from his contact with Sandy, it was clear to Patsy that he also needed to explore the spiritual dimension of his decision, what it meant and whether it was the right thing to do.

  While Craig and Patsy were both still attending church services, they knew they needed to find a different space to deal with this new phase. Then one afternoon a neighbour suggested to Patsy that Craig contact a respected spiritual counsellor in Port Elizabeth, the retired Methodist Church Bishop of Grahamstown, Reverend George Irvine.

  8

  Why?

  Soon after he had made the decision to end his life in April 2009, Craig bought a diary and composed a 30-page, handwritten letter to his parents, transcribed here.

  To my beautiful parents

  When I think back on my life and my ongoing physical suffering and pain and all the other non-related health ups and downs, I know with 110 per cent surety that I would do it all again with all the NF1 issues, if it meant having both of you as my parents. You are both wonderful and beautiful in your ways.

  Dad, your loyalty, commitment to the family, your willingness to always put yourself last (almost to a fault), the quiet love shown through your actions reminds me of a song I used to listen to when I was young.

  The chorus went “love is not a feeling but an act of goodwill”. I always thought this to be true, but like a fool, I only realise now that you, Dad, have been living with this as your mantra (maybe not consciously) every day of my life from birth.

  There are so many memories of our lives. For example, you living next to me in the tiny room in London, to your never-ending support in my golf career (while it lasted), to your commitment to my vocation studies, which I never got to carry out because of health issues. You have a beautiful heart, Dad.

  Mom, my special, beautiful mom. I don’t know how I would have coped emotionally without you. Not many, if any, mothers and sons share the emotional bond we have. Despite efforts by many to say that it was an unhealthy, overly involved relationship, we, rightly or wrongly, maintained it.

  I could never have coped without the soft, feminine love that only a beautiful gem heart can give. I truly believe that if I could decide to do it over again without NF, but had a different mother without our loving relationship, I would choose having NF1 and all that goes with it if it meant I could experience your love, angel love, not from this world love.

  Even the strongest soldiers grow weak, and as a very wise and great man who happens to be my uncle and my godfather recently said, “Nobody knows more than Craig himself how much he has suffered.”

  I honestly feel I have played my hand well in life. I would have “folded” much earlier were it not for the two of you, my beautiful parents.

  This disease has raped me emotionally and physically, violently and brutally, and repeatedly throughout my life. Our personalities develop from childhood and reach a plateau of growth and basically then that’s who we are, bar a few changes from events that mould us differently.

  I truly feel that Craig, the true Craig, has been slowly but surely eroded over the years of my illness, which has been my whole life from birth to now and has been drastically accelerated over the last number of years.

  Now the true Craig (Craig beyond his body) is so tired he is barely there and I want to leave peacefully before he has vanished.

  Many feel that things happen for a reason. Some believe this as well as the fact that we are all given challenges in life to make us stronger.

 
; Well, I have been broken all the way down, from my challenges in life.

  If I could ask people to ponder one point, it would be to consider the possibility that even the camel, as the well-known saying goes, had a last straw that broke its back.

  I am fully aware of the pain and the suffering as well as the poverty in the world. There is so much suffering and everyone on earth has their problems. Physical pain and the level of its severity is a self-perceived thing, we all experience physical pain differently, what one person can take is not what the other can stand.

  I am not going to grin and smile and say that things are fine. I deeply admire those who have the ability to do that. I am now beyond the point of caring what other people outside of our wonderful home think. They will never understand what I have had to go through.

  People look at me and I look normal. I ask them to look at my medical history and all that goes with it and the imminent arm surgery as well as the adhesion forecast, not to mention the unpredictability of NF1 and how my quality of life has changed.

  Those who have known me all my life know how I have coped and, even now, with increasing health challenges, know how the real Craig has changed.

  Craig is hardly Craig any more and I want to go in peace before the little bit of me that is left has gone.

  I wish with every fibre of my being that I was stronger but reality cannot be changed. This is such a sad thing but if we don’t know how to accept reality then we live in denial as the famous Serenity Prayer goes: God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.

  I have tried my best to change the things I am able to. And have fully accepted those that I cannot and, yes, I know the difference. It has got to a point where I have been forcefully put in a corner and bricked in and to top it off, the bricks are falling and caving in on me, bruising and destroying me.