© Sandy Coffey
Craig with Sandy Coffey
© Sandy Coffey
Craig and George Irvine
© Sandy Coffey
Sarah Mjebeza and Craig
© Sandy Coffey
Patsy’s favourite photograph of Craig
Craig with Hogan
© Sandy Coffey
© Sandy Coffey
St George’s Hospital, Port Elizabeth, 2008
© Sandy Coffey
© Sandy Coffey
Final family portraits
© Sandy Coffey
Craig and Patsy’s afternoon nap
© Sandy Coffey
A gift for Patsy
© Sandy Coffey
Neville, Patsy and George Irvine on the pier where they scattered Craig’s ashes
© Sandy Coffey
From: Craig Schonegevel
Sent: Thursday, 16 July 2009 7:28 PM
I knew I was different, felt different when I got back from having brain surgery and I needed a nanny with me at school break time to look after me while I was recovering. She was a lovely woman; the kids thought it was funny and made fun of it years later. Even those who were not present somehow knew about it years later. I was not embarrassed and liked her very much and years later I used to always greet her when I saw her in the school passage. One day she retired from the school. Evelyn was her name.
From: Sandy Coffey
Sent: Monday, 20 July 2009 7:05 AM
If you could have it different, what would you love to be very good at?
From: Craig Schonegevel
Sent: Tuesday, 21 July 2009 10:03 AM
I would love to be very, very wise with an even bigger heart. Have the ability to use the wisdom and the compassion from the heart connection to do and create beautiful things. When I refer to creating it does not necessarily mean tangible things.
Also I would have loved to have somebody special who would “get me” as a person, with a complete spirit. And to use my wisdom to form an unshakable bond with them. Ironically, on a friendship level, two people have come into my life at the later stages of it, one male, one female (you and George), who are older than me but have become what I consider very special friends.
I would also like to be a very good friend to lots of people who are breaking inside, especially kids.
From: Sandy Coffey
Sent: Friday, 17 July 2009 9:51 AM
After being so teased and rejected as a child, how do you find it in your heart to forgive so easily?
From: Craig Schonegevel
Sent: Saturday, 18 July 2009 10:35 AM
A person can forgive, but you never really forget. My heart, like my body, has been scarred deeply by those people but it’s kind of like waking up from a bad dream. Sometimes you remember the dream years later but you know it did not happen. I know it happened but my heart was so broken it was not capable of anger; it’s weird, I would not say that I am particularly a good example of a person who is skilled at forgiveness. I get angry with certain people and what they have said or done. It’s weird to forgive but certain things make me angry for short periods of time when I think about them. I try not to dwell.
From: Craig Schonegevel
Sent: Wednesday, 15 July 2009 4:35 PM
To answer your earlier question about my relationship with my dad. Well, it is like the type of relationship/marriage that lasts for 60 years. The couple accepts each other with total love for each other. Loving each other intensely and are blindly loyal to each other and are totally committed to each other.
Reality also exists and it is not a fairy tale. We also naturally disagree on certain points and turbulent times do exist in the relationship; the love is strong enough to survive the biggest of storms though.
From: Sandy Coffey
Sent: Tuesday, 21 July 2009 5:10 PM
Most people spend their lives working on quality-of-life stuff, like eating right, exercising, buying things for later, an investment in the future.
You are spending your time closing down. Can you tell me some of the things you are doing to prepare for Switzerland?
From: Craig Schonegevel
Sent: Wednesday, 22 July 2009 12:16 PM
I have sold a few large items for cash to buy top-of-the range running shoes for when I walk my dog in the morning. I have given away lots of clothes to underprivileged people, good clothes that I bought for “going out” and never really got the chance to wear since my life went pear-shaped and I have never really gone out after or since.
I have made a Will and left special things from my life for some people. I wrote my parents a 30-page letter. I now sleep on my parents’ floor for the comfort of being close to my mom.
My dad is snoring very loudly at present and keeping my mom awake so she cannot sleep and has asked him to sleep in my bed. So, luck for me to get to sleep in the same bed as my mom.
I have never lain as still in my life, being close to my mom gives me such peace. I must admit that I agree with her on the snoring thing (sorry, Dad). I am living on liquids and abusing laxatives to spare myself the trauma of another obstruction in my colon.
I am trying to ignore the pain from the tumour on my arm, I find new ones (tumours) weekly and try to ignore the fact that more are appearing and some are growing in size.
I have made my best two friends of my life (they don’t even know that). One I see weekly and talk to him, the other is writing my story. I have removed some pictures from my wall of past hobbies that have been taken away from me with violence. I am walking my dog for about 15km every single morning.
I walk very, very briskly, jogging a little. While doing so I look at the sea at times. I get rid of some frustration this way. I check my emails constantly on certain days to see if there is any news from Dignitas. I have one cocktail a night to help me relax. It’s also a liquid, so liquid diets do lead to some good things (I did not have a sip of alcohol until 24, when I discovered a passion for red wines).
After my first colon op I did not drink until now. My mom makes a great Cosmopolitan!
Alternatively the Northside Crusta at Radisson Blu is also great. I don’t have any other cocktails that may contain pith or pips as that would lead to problems with my colon.
From: Sandy Coffey
Sent: Wednesday, 22 July 2009 6:38 AM
What I thought is that as a kind of diary, you could send me your thoughts for the day… can be as long or as short as you wish.
“Today’s thought is” sort of thing.
Craig began to note these “thoughts for the day” in subsequent mails to Sandy.
Wednesday, 22 July 2009 12:41 PM
I phoned Dignitas earlier today.
That name should be changed, they are definitely not treating me with dignity. The lady who answered was a different lady to the nice lady who I spoke to about the previous two emails. This lady was very abrupt.
The lady last time followed up by phoning the physician to ask what was happening with my case. This prompted him and my case was referred to another doctor. The lady last time said by “take some time” (which they used in a letter to me) she meant weeks not months.
But this lady showed zero compassion and said they were very busy when I told her that I have not received answers to my last two pleas for more information and emphasising my suffering.
She said more time could even mean months, despite me telling her I am suffering a great deal. She did not even say she would follow up like the other lady had at an earlier stage of my case.
Dignitas is going to destroy my mom and me in this process. They aren’t this compassionate group that I once thought they were; all they are for me now is a means to an end.
They cannot just accept my money and ignore me as a member.
I have had to fight my entire life. Why am I now having to fight more? It is ridiculous. It should be known later how Dignitas treated me and how I had to fight even for this.
Sunday, 26 July
2009 3:52 PM
On what I wrote earlier. I do not feel sorry for myself in any way. I do feel cheated though. I have tried to be strong and adapt with each medical/mental/NF1 direct and indirect effect and still nothing could stop the beast from raping me further of my health, joys in my life, coping mechanisms and realistic dreams.
I do have times of anger but that is normal.
I am tired though, mostly tired and with all the fighting that I have done, which has only brought on the repeated attacks, the least I deserve is to be at sleep, because that cannot be violently raped by the beast.
My arm is becoming more and more of a problem. The tumour is growing and causing more pain. I have always tried to ignore it, with all my other problems. Now I am letting go and don’t have to pretend any more. I hope that people will realise the depth of my fighting.
They think I have this condition and ops, then I come out and they think: “He’s fine.”
The fight is constant. They will never know how hard I have to fight.
It occurred to me today that the only years of my life that were somewhat unaffected by NF were not good either. They were a few years of social rejection, bullying and loneliness.
Tuesday, 28 July 2009 4:43 PM
Living on liquids and laxatives to avoid another obstruction in my stuffed-up colon. I am so used to it that I don’t even think about the fact that I am not eating solids. Whether you eat normal food or just drink liquids like I do, having nutrition and sustenance is a privilege, a blessing in a starving world. I am deeply thankful for this blessing.
Lately, I’ve been thinking about all the normal things I used to eat when I was a child, without thought or guilt. Things my mom used to make for me with such love when she got home from a very stressful job. Things that were dished up for me when my mom and dad used to have people over for supper that I would enjoy.
I remember the tradition that I started when I was still at school, of Friday being family braai night for the three of us. I remember making my beer or garlic bread as my contribution. Bread is a very difficult thing to digest. I recall my sweet tooth and eating jelly babies by the packetful when I was young.
I remember being health focused and only eating very healthy foods. Oats, chicken, fish, roast veggies; no refined sugar, saturated or trans fats, caffeine, alcohol, red meat, artificial sweeteners, colorants. How I used to study the ingredients list on labels.
Then the colon problems started and went on over five years with hospitalisation over a number of days for monitoring with the obstruction eventually passing, followed by the dietician’s advice and anxiety over pips, peels, seeds.
And the many, many other foods which should be avoided. Then the blockages, despite following the planned food. People don’t even think about what it does in your body, never mind the health implications which some are aware of when they choose to eat something. But what trauma food can cause in your body. If anybody ever looked after their body it was me.
Now this. I just want peace. I have a Plan B that may have to be used. It will require me to be alone.
So, it is seemingly likely I will be in the position of being alone, but it will not dictate how I will spend the day with my mom.
Day by day, hour by hour, minute by minute, second by second, the nightmare will eventually end.
Sunday, 26 July 2009 11:15 AM
I took my dog for a walk this morning. I saw young families (younger than I), young couples, some with kids screeching with joy.
A triathlon event was on the go. People were running past me in their triathlon kit. Further down my walking route, a surfing contest was in progress. People there seemed so carefree, some even eating nice things to “refuel” (eating normally, people don’t even think about it).
To me solids equal the most traumatic pain and surgery. I live on liquids; I don’t care about food any more. People just chew and swallow, they don’t even think.
When I used to play golf on Wednesdays, the three guys I used to play with used to talk to me on the practice putting green. They were in their sixties and seventies.
They used to say that I was the luckiest man alive, that I lead the life we all wish we had. “You just come and play golf on a Wednesday afternoon, no work.”
They did not know what they were saying. They had wives, children, grandchildren and all had had successful careers.
I look so bloody normal to the eye.
My scarred body. My learning disabilities – work? Good health?
Hell no… I was living in my personal hell.
People should learn not to judge a book by its cover and think the book looks good when they see the hard cover and not even open it; maybe the pages are torn, shredded to pieces.
Wednesday, 29 July 2009 3:36 PM
I was awake very early this morning, breathing, trying not to think too much. When I did put my feet on the ground I said out loud: “The Fight Begins.”
When I was drinking my lunch (the smoothie that I have concocted) I had to change the hand in which I was holding the glass. It’s only a 500ml-type of beer glass, but it was too heavy to be holding in my left hand as the extra weight caused my arm to get very painful in the area where the tumour is; the pain remained there for two hours. From holding a light glass – I used to be able to bench press my own weight, do pull-ups and chin-ups until the cows came home. After being so hammered with my health, that is where I managed to build up myself.
The last five years have just been a ravaging of my body and old self.
Thursday, 30 July 2009 3:48 PM
This morning very early while lying in my parents’ bed with my mom, I thought of this: All my life I have searched for a deep love and the more I suffered the more I craved it on a deeper level.
I never experienced acceptance and love from the world really. My mom gave me this unconditional, pure, consuming, totally unselfish, deep, heart, soul, soft, protecting love.
It is the type of love I needed because of the pain of my disease and all that went with it. As I became more affected our love grew, many said it was not healthy, not normal and tried to stop it; unsuccessfully.
It just had the reverse affect when they tried, but my mom has always known that I need it to cope, to be sane.
I looked for this kind of love in girls I tried to meet, but really it was unrealistic to have ever even thought such a love can be remotely duplicated by another life partner. I always thought I would live alone, that nobody truly “got” me.
There was a little of me that believed that it was possible for me, yes me, to be loved intensely by another partner; this has never been so much a physical thing, but an emotional connection. It is beyond that now.
I think I am lucky to be leaving this world with an experience of love like I have with my mom, and that it has not been distorted by a relationship with a partner and the pain that goes with that, because what I have experienced with my mom is so beautiful words cannot begin to do it justice.
Saturday, 1 August 2009 12:26 PM
While Craig was still living with a degree of hope in early 2009, he spoke of getting a puppy, a Norfolk Terrier, for himself. Whereas our Jack Russell, Hogan (named after the famous golfer), was a very popular member of the family, he did not like to be picked up and made a fuss of. Craig needed to hold and love an animal as so much was being taken away from him. An affectionate dog would help fill a void in his life – a dog he so much needed to help him cope, as he put it.
– Neville Schonegevel
I am looking back over my life like an old man looks back on his and I am only 28 years old. All I really see is physical and mental pain, suffering and trauma. Yes, I know I have blessings.
A number of months ago I had the idea of getting a new puppy. (This was a coping mechanism, after having so many of my passions, interests and activities taken away.)
I found the dog I was looking for, it was a Norfolk Terrier. The breed is uncommon in South Africa and was only recognised as a separat
e breed by the Kennel Club in Britain in 1964 and in America it was recognised as recently as 1979. I am told the only two breeders in the country happen to be PE based. My mom was so supportive of me getting one; she knew it would be something for me to love. My mom and I used to go and visit them after we saw them at a dog show.
I was so happy; the waiting list was a mile long but the breeders said they would make a plan for me (I think on some level they knew I had problems).
I had a name for the dog; I would call him Gecko (just like the tiny lizard). I am so scared of spiders and things, but geckos I love. So much so that my mom calls me to get them out of her sight when she sees them.
My mom loved the name. Anyway, after my last hospitalisation for an obstruction, I said to my mom that there was no way that I could be a parent to a dog, a responsible parent, and that the mature thing would be to accept this. I kept the pictures of Gecko’s parents in my saved items, but recently, as I am turning off, deleted them and said goodbye. I never did hear from those breeders.
Then today, I discovered I still had one picture and over tea with my mom I showed her a photo of the mother dog on my cell phone and asked her if she remembered and how sad it was that so much has been taken. She told me that, just three weeks before, the breeder had called to say that there was a dog for me. My mom explained the situation to her and told her that it was not going to happen. I can only thank that lady for showing me such grace by granting me my wish.
My mom said to me it would’ve made the current situation more difficult. As tears were trickling down my face, I told her that I had made that decision long ago and was not sad because I couldn’t get it. It was once again the story of my life. I tried to find love and a coping mechanism and it’s taken from me.
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