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.
8Why?
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
