At this point an MRI scan didn’t show up any abnormalities. Craig was relieved and the last page of his diary entry reads: So maybe it is a good time to stop writing for a little while and let things happen – stomach question, qualifications and “angel face”. Who knows, we fool ourselves if we do, for only God knows the plans He has for our future.
7Deciding to End It
BUT THE FUTURE, as Craig soon discovered, was about to take a turn for the worse. The blockages were becoming more frequent and prolonged. In June 2007, he was admitted to hospital again in the hope that an obstruction would pass. Instead, after a number of terribly painful days his small intestine ruptured, requiring major emergency surgery in the form of a laparotomy.
It was a procedure he was dreading and that would involve reopening the lengthy scar on his abdomen (caused by the original surgeries as a child) to get to his intestine. Afterwards, Craig spent two weeks recovering in ICU attached to various pipes and drips.
Back home, he recuperated slowly. The wound wouldn’t heal. It wept and bled and Patsy, Neville and Craig returned to the hospital on several occasions to have it dressed. Each time the Schonegevels would find themselves repeating the routine explanations as they encountered new medical personnel on duty.
“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
