He was aware NF1 affected his coordination and made him clumsy so he tried to make up for it academically. Later, reflecting on his anxieties, he wondered whether medication might have helped him to cope better.
When I think back on my life, in the younger years, I realise I should have been on medication then already. To have calmed me down when I would get anxious about new work, or school, anxious about homework, anxious about knowing my work well for tests, even going over points, lists and facts in my mind over and over during weekends when I was supposed to be relaxing.
He found the bullying and teasing he experienced at school excruciating and the effects lingered for the rest of his life. Craig was hurt at how cruel and unthinking some of his peers could be.
I was a soft target. I was not small and physically weak. Maybe I should have taken something to lift me when that boy started calling me names and when he got people to join in on the taunting, during class, during break when I would often sit alone. People who I got on with fairly well with one day would join him the next. Different groups would throw pebbles at my shoes, non-stop, mimicking my nasal speech. They loosened the front wheel of my bicycle and let it down despite my asking them not to. I have forgiven them but I have not forgotten the sadness I felt at the time.
NF1 and the concomitant complications – medical, academic, emotional, physical and spiritual – became a part of Craig’s, Patsy’s and Neville’s lives. They worked through it all, dealing, as families do, with each crisis as it evolved and was either solved, accepted or incorporated into new patterns of daily life.
Patsy was there to comfort Craig. She grew accustomed to having to become the “soft place” he could retreat to and where he would try to recover from the onslaught from the world outside.
Craig was a conventional boy who grew up into a conventional man. He absorbed the values of both of his parents – honesty, generosity, politeness, industriousness – and he shared with them a deep compassion for others. He dreamed of and envisaged an ordinary life with a wife and family but he understood this might be impossible for him to achieve.
His feelings of isolation and “otherness”, his long battle with NF1, his self-consciousness about his body, particularly the fibromas – benign subcutaneous tumours that developed all over his body – made it difficult to interact with women his own age.
After one encounter with a woman while buying a face wash he wrote: My skin is covered with fibromas and café au lait marks. I know this makes me different and if someone sees some of the things they would think it is ugly. The side of my face that she touched has a café au lait mark, not a big one, but it is there! She said my skin was beautiful. I know I take care of myself but beautiful? Nobody has said that to me, apart from my family.
He attempted to cultivate a few romantic connections, sometimes with a little help and encouragement from his mother, but his diary is filled with apprehensions and insecurities about these interactions and the possible consequences of disclosing his illness.
It feels wrong to be 22 and not have a girlfriend yet, he wrote at the time.
Later he observed: I drove past a junior school once. Saw mothers and fathers collecting their children. It makes me sad to think that I probably will never experience that, never mind the fact that I probably won’t have kids in the fear of passing on NF to them. But what are the odds of me living a typical life with a “white picket fence”, a loving wife and a couple of kids to play with, to teach and to be proud of? These are the things my heart really yearns for. But how do I go about attaining them?
Different parenting styles, in the best of circumstances, often result in disagreements, heated debate and self-reflection. There is no single “best practice” as each family unit creates its own alchemy, informed by an array of “ingredients”, including the solidity and maturity of parental relationships, the personalities of the protagonists – parents and children – and even religion and culture.
Each family has to deal with continuously shifting solidarities as adults and growing children assert and defend, or retreat and rethink, various positions. Patsy’s and Neville’s commitment to Craig and the family and their openness and honesty about their feelings are what enabled them to work through many challenges over the years.
The triangle in the Schonegevel household was particularly complex. In the absence of a large group of friends, Craig had a few good friends who he mostly saw on a one-on-one basis. However, Patsy became Craig’s confidante, ally and protector and in many ways the relationship formed the fulcrum of his existence. Theirs was a hermetic and intimate space that was difficult to penetrate.
Neville is a successful businessman and the demands of his job often kept him away from home and the intimacy and safety Patsy and Craig created in that space. When he did return, he says he often felt excluded and misunderstood. He explained to Patsy that he thought she was overprotective and indulgent of Craig.
“Needless to say, Craig’s health contributed to this and also the fact that he was an only child, but my concern was that if most of his social needs were being met by their very close relationship, then he was less likely to foster other close friendships. What would the consequences be for him in later life, particularly bearing in mind that he had no siblings?” Neville recalls them grappling with this at the time.
Craig too examined his relationship with his father, writing: I think of my relationship with my
