The Last Right Read online

  On Sickness and Ill-health

  I think it is easier to be sick when you are a child. Aside from the medical facts of children healing easier and faster, I think there is another side. The mental side. I could probably not handle now at 22 what I handled at seven.

  NF used to occupy my thoughts for many hours of the day. Now I don’t give it much thought, it is a part of me, my life now. When I am alone though, late at night and when I can’t sleep, NF does creep back into my head.

  I blame NF for my seriousness. I can’t help that I think like an old man. You can’t teach an old dog new tricks. How can I change personality traits that were ingrained into my personality at a young age?

  When you are told at a young age that you are different, you don’t quite understand all the medical explanations and implications but you soon understand. When you sit out of a rugby or soccer match at school while you watch your friends enjoy themselves. They look to the side and see you sitting there alone, you stick out. You’re different.

  I suppose at that age children are naïve, trusting and not quite sure of the implication of occurrences.

  I feel that I have really missed out on the typical life occurrences of younger people. Many people miss out on these things for different reasons. It makes me sad to see these people.

  On Making Your Parents Proud

  What does it take to make your parents proud?

  I don’t think my parents are really “proud” of me. They love me, that is for sure, and I’m grateful for that, but what would it take to make them really proud?

  Never made the school team when I was knee-high to a grasshopper, never brought home trophies or medals or excelled in the important things like maths, never went to a traditional family school like my dad or his dad, never went away to some big varsity.

  We all die, don’t know when, but no one can escape the grave, so are all these things really important? I think when it comes to making your parents proud they are.

  On Love

  What is love?

  I wonder when you look at the world. Can love be pure, innocent? Can a person feel love for another with unassuming, overwhelming and true love? I think not.

  Sometimes, when the weather is perfect, sun out, not too hot or too cold, no wind, but a slight breeze and I am walking, I have no worries or thoughts. It’s great.

  On Having Someone Special

  Everybody should have somebody they can talk to. Somebody who understands how they function, what makes them tick and how they feel even before they speak, but if you can’t speak, you must feel as if you are going to explode with all the words that are stuck inside you.

  I know two men who can’t speak. My friend Alec who was born without the gift of speech and a boy named Sala from the Middle East, who I met in the UK at the Great Ormond Street Hospital. Sala was a regular boy until he drank caustic soda by mistake one day.

  It must be terrible for these guys, they must be so frustrated. There are occasions when I feel I cannot talk about the loneliness and pain in my heart as I have no words to express…

  I have this picture in my head, this feeling is really I’m old, really old, with nobody to take care of me in my last years. Parents and their generation all long gone. I’m alone, how to cope?

  With all who showed an interest or who cared now gone, how will I cope in my later years? Can I last for maybe 40-or-so years with the feeling that I am feeling now?

  A smile can mean so much. It can make your day, it can give you this warm feeling inside, you receive the smile without the “giver” even knowing what it means. Is it possible to experience that feeling every day?

  Where to find that person that can give you that warm feeling?

  On Happiness

  Photo albums bring back memories, good and bad. Have you ever wondered what it would be like to freeze time in that instant? To preserve that happiness in a bottle or rewind the bad ones so that you can change the outcome?

  Sometimes we catch a glimpse of perfect happiness. Life is worth living in these moments. Moments when you feel all warm inside and at that moment nothing can bring you down. But nothing lasts forever.

  But then I suppose you would be playing God, and that is not our job.

  6

  Overcoming Obstacles

  CRAIG MADE A PACT with his body and NF. He reckoned if he treated “them” well, if he exercised, ate healthily and looked after himself, he would have some measure of control over the disease.

  I go to gym often, it’s better than Prozac. The endorphin high when I’m finished with a weight or cardio session makes me feel better. About life, myself. I forget my problems and am in my own world as I listen to my iPod. Safe, warm, in a nice place.

  For about 13 years, between the ages of 10 and 23, Craig achieved a precarious equilibrium. He discovered golf, a game he was good at, even making the Eastern Province Under-15 team for two consecutive years, an accomplishment he was extremely proud of.

  Even when he stopped playing serious golf, he continued to enjoy the game on Wednesdays, joining three men who were approaching retirement: a medical doctor, an academic and a businessman.

  These men delighted Craig with their banter. He enjoyed their company and sometimes shared some of his thoughts with them.

  They’re great guys and make me laugh. I enjoy the game, feel less pressure to perform, unlike I did when I was younger.

  After finishing high school Craig completed a marketing diploma and later qualified as a personal-fitness coach. His goal was to open his own fitness centre.

  Deep down I wish I could have been a doctor or something. To help people. I suppose as a personal trainer I will also, in a way, be helping people.

  But while he was always hard working and diligent and attempted to overcome most of the obstacles that kept appearing in his life, Craig never escaped a gnawing anxiety and doubt that seemed to haunt him at every turn.

  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 parents, with my dad, how it’s a good one, that he loves and cares greatly for me. I think how or what I can do to get closer to him, like we were when I was in hospital in London with him while my mom was at home in South Africa after a lump was removed from her breast. I think of this boy of eight and his rock of a dad who held it all together, and how close we were then. I suppose some separation comes with age?

  He felt that comments from others about his closeness to Patsy were sometimes “cutting”.

  I am not a child. I have to grow up. I think it is the lack of female interaction in my life, that soft side of a woman who sees my heart for what it is and who I am. Comments were made about how I demand a lot of my mother’s attention, have always demanded a lot of her attention, at the very time when I needed support the most from her, the kind of support only a son could feel from a mother, different but not more important than that which a father could give.

  His diary mentions one evening listening to their raised voices in the room next door: I sense or hear raised voices arguing? About me?? I just sense that. I do not know.

  In an attempt to reach out to Neville, Craig bought him a “really huge” Father’s Day card. I write words to my dad from my heart. Things that men don’t usually say. It is a pity the way men are with this. I write many things. He likes the gifts and manages to fit one of the huge jellybeans I also got him into his mouth. Really they are monsters, he chews, he loves them, he reads the card, it makes him laugh a little… This was my way of trying to creep, to get, to penetrate his heart and to get him to understand that I admire, that I care and love him, that I want only good things for him. I know he appreciates the card, but I wonder if I really got through to him? In my heart, in my mind, I know he has a very soft side behind his tough exterior. I just wish he can see my love, my care for him.

  In 2006, when Craig was 26, he decided to move out of his parents’ home and into a flat of his own. It was a decision he initiated with the full support of Neville and Patsy and with the hope that he would gain more independence.

  It’s a lovely flat. Warm, cozy and modern. To have my own space, to not get involved in the house’s issues, to do what I want. Nights are lonely, not when I’m watching TV, reading, enjoying supper and my one glass of red wine though. The loneliness comes when I turn off the light when I think of living like this all my life. That’s when I wish I had someone in my life. Even if they aren’t physically there, just knowing that would help.

  But after about three weeks, the loneliness and anxiety eventually proved too overwhelming and Craig periodically moved back home with Patsy and Neville, keeping the flat while he attempted, with his psychiatrist, to find the correct combination of medication to help him cope.

  After a while, the family agreed to a new arrangement. Craig would spend Mondays, Tuesdays and Thursdays at his flat and Wednesdays and weekends at home. Craig liked the plan and his parents were supportive of it.

  I got through the first three-day plan better than I thought I would. I feel strangely confident. This may swing and I don’t know but I feel there is hope. I am going to get totally back to being self-sufficient and independent, Craig noted.

  He began to study for a first-aid exam that was required for the course in fitness instruction. In between, he read, watched television, listened to music and went out to restaurants, often on his own, acutely aware of the couples that surrounded him.

  I sit there alone and all I see is couples, couples, family, friends. I sit alone and I have no problem with this. Am comfortable with it. I walk to my car in the car park. Couples, couples everywhere!! Are they really happy in each other’s company? Do they complete each other? Where is my “angel face” (Craig’s description of the woman of his dreams)?

  But sadly, his attempt at independence and finding his own feet was to be short-lived as a series of mounting health setbacks began to whittle away at the tiny bit of freedom he had achieved.

  While Craig had been enjoying a measure of stability as far as his health was concerned and he had gone for regular medical check-ups, a series of growths and adhesions began forming around internal scar tissue from his three major invasive surgeries as a child.

  The lesions began to cause increasingly painful blockages for Craig. He would be crippled by the pain; the family would often have to rush to the emergency unit of the local hospital in the early hours of the morning.

  After his fourth episode he wrote: On the Thursday morning after the Wednesday of the first-aid exam I wake up with extreme abdominal cramps. I know straight away what is happening. I go to the loo. My stomach works, I wake up my parents. Luckily it is Wednesday
and I am at their house. Mom takes me to casualty, Dad follows.

  Each time Craig was admitted the family would have to explain his health issues to the staff on duty. In many ways the Schonegevels knew more about what was needed than the medical staff.

  I tell the sister that I am not going home again like that last time after the drip only to be admitted to another hospital three hours after I get home. She says that won’t happen and that this time I will be admitted.

  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.

  7

  Deciding 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.