The Last Right

by Marianne Thamm

  I think I am rational and mature enough and that’s why I knew when I returned from the obstruction and with arm surgery imminent that there was no way that I could look after and be responsible for that beautiful dog. If only people thought before they just had kids, one after the next, without considering the current situation and the future.

  Monday, 3 August 2009 3:43 PM

  I remember being in a room with the guys getting dressed for golf one day and them seeing me change in the morning, and this one guy was on about how ugly my body was. Now I wonder what they would say now; it’s been soooooo much more raped by this disease since then.

  This was the first year I played in the Under-15 team. Also in the first year this guy had a stack of erotic magazines and they kept on saying to me that night, “Come, Schoonie, come look”, cat-calling my name and making fun of the fact that I would not look at the magazines.

  For me it was not an option or choice. I had no urge and no desire to look at those books.

  Wednesday, 5 August 2009 7:20 PM

  It is noteworthy that this email was written by Craig a few weeks before ending his life and yet he uses words such as “stable”, “connected”, “peace”, “sound mind”, and “rational”.

  Emotionally, I have never in my life been more stable than I am at present.

  Spiritually, I have never in my life been so connected and at peace with my God as I have been for the last while.

  Psychologically, I am of sound mind (which many will confirm) as well as completely rational.

  It is sick to expect anybody to carry on accepting, adapting to being operated on and for there still to be no cure. We live in an age where we do all sorts of things but science can’t benefit me.

  Tuesday, 4 August 2009 3:25 PM

  Lately my dad has been “pecking” me on the head when we say goodnight. When I am lying on my right side in bed and it is my left side of my head that he pecks I feel virtually nothing. It is numb along there because of the fibroma that was removed along the nerve that runs on that side. There are more fibromas also growing in the same area.

  Wednesday, 5 August 2009 3:42 PM

  I want to say to mothers who say when they read the book: “How could this child do this to his mother?” – I want to say to them what I have already said earlier: That the greatest love is to love somebody so much that you are prepared to let go. This cannot really be understood as our love and situation is totally different.

  When I go through all the pain and operations and new fibroma growths, and emotional trauma, when I live my days with this incurable disease that has affected me GREATLY, it violently rapes and destroys my mom’s heart, spirit, mind, body, soul, life, present, past, future, child, purpose, reason. I could go on and on and on and on but I shall refrain.

  Those words could NEVER illustrate how destructive this force is.

  It has taken a while, but my mom looks back now on my past, my present and future and knows that this is the right decision that her son has made.

  Another thought: My mom has been using the perfume “Angel” for the longest time… Not only is the name applicable to her because it is what she is to me, but it smells so different on her from others who wear it. Her skin was created for it. It brings me much comfort. When I am sick I ask my mom to spray some on my pillow.

  Thursday, 6 August 2009 7:13 PM

  Many people may think I should be booked into an institution when they hear that I have a suicide plan if Dignitas has not got back to me. The thing is that I am totally in control. And it would be insane to expect me to endure this kind of torture for much longer.

  Sometimes the best thing people can do is to do nothing, just to quietly support… People naturally want to call and visit and give time and counsel and suggest you do this and that.

  My mom and I are much the same in this regard, we like to be quiet by ourselves or have the very close friends around, people who totally “get” us and how we function. Some of the things they think are best for us are exactly that: what they think. Only we know what we really need, if we are totally in touch with our true self. I accept that they do things with the best of intentions, but it’s not rude to gently tell them to give you space…

  Working on a book in these times has not caused me any stress or worry; it has given me the opportunity to tell my story, and this is really because of the person, Sandy Coffey, I am working with. She has made it so easy for me, I feel so understood and comfortable with her. I am the lucky one in so many ways to get to experience more softness that I have craved my entire life…

  I don’t ever say anything I don’t mean. It’s so easy to compliment someone, just look for the small things. Like when I phoned this lady and her son answered. He answered and said hello and who he was by name. I have always answered like that too, my entire life. This boy, like me, does not have it easy and lacks self-confidence, but he possesses some of the simple life skills like the way he answers the phone. The world does not see this as a positive quality, but it is.

  Why the hell is it so difficult for people to see the simple qualities of an individual and build them up?

  Dignitas has the power to make my dream come true; this they know, yet they choose to make me suffer on by ignoring me and dragging it out. They know, too, how I am suffering and they just stay quiet. They knew that all I wanted was to lie in my mom’s arms with legal-free implications and no anxieties. They are treating me in the same way NF has treated me my entire life…

  I think that I am entitled to peace, God knows I cannot go on. After fighting as hard as I have all I want is to go on retirement for good. A retirement that is constant in that it’s always the same: peace, peace, pure love, warm and soft.

  The rapist will soon be killed by myself. The law has been too lenient with him. It’s time that with my passing IT will be hung, and put to death and hell, just like it has made me live in hell all my life!

  Monday, 10 August 2009 8:57 AM

  I am just trying to live second by second. Concentrating on a few things to do that bring me a little laughter and joy. Yesterday – my dad has these old sleeping shorts that he got for a gift some years ago, with weird pictures, wording, colours – I thought it’s time this man gets some different shorts to sleep in, as he will never buy other ones in his life. I wanted to bring some humour into my life so I went to the store to get him some others. I found more or less what I had envisaged.

  I got two pairs for him. The one had pictures of a vicious dog printed all over it, under the many dogs’ heads which were all baring their teeth were the words “hound dog”. He did not “get it” so I had to explain. We all had a good laugh!

  The other pair had the sentence “The rumour’s true”. This I also had to explain to much laughter. Such good medicine.

  The sleeping shorts were in a gift bag; on the card I wrote: “Dad, for the love of the Pope, please get rid of the helooha hona-loo-loo shorts.” (These were his old shorts with a lady dancing on them in a Jamaican skirt and the words with the dancing lady read “helooha hona-loo-loo”.) He hasn’t really taken notice of what they said since he got them as a present two years ago.

  I told him: “Dad, those pants give me the heebee jeebees, please wear these!”

  I thought late last night that I want to have more fun in this way. My old man wears the same old shirts to sleep in, year after year, and I will not “leave” before I get others for him. So I remembered this store I have seen that sells really funny men’s shirts (I must admit that I myself would never wear these shirts for anything else but to sleep in, I am way too conservative).

  My dad will still enjoy them though, and wear them to sleep. So, I am off shortly with my mom to that store… I hope my family can laugh more when we return.

  Well the store did not disappoint and there was much laughter when I gave my dad two shirts, one saying, “If I gave a shit you’d be the first person I’d give it to.” The other has a male and female stick figure on it. The ma
le, who is holding a parcel, says to the female who is holding a pot plant: “Nice bush”, and the female says, “Nice package.”

  Tuesday, 18 August 2009 4:04 PM

  My attempt failed over the weekend. Just when I find a way to cope it is taken from me or fails me.

  I will persevere though, until the deed is done.

  After the last operation I was in this semi-private room (which thank God I was moved into because my mother complained after eight people were visiting the one bed next to me during the first half an hour of my arrival from intensive care). The name of the man in the new semi-private room was John. He was old and had the softest spirit; I think he and I could have been best friends in another life.

  He was suffering and was full of bedsores. I used to always reassure him of things. We were on the same meds for anxiety. When he asked me what this medication’s name was because he needed some, the one nurse shouted at me for “infecting” him with the need for the tablets. When he left the hospital he was moved into a hospice-type place near his home in Grahamstown, where God, please, let that sweet soul get some proper affection.

  Later on his wife phoned my dad and said that John had told her that “Craig was the best roommate he had ever had!” Sweet John.

  Last night I had a horrid nightmare. John and I were being cut, cut, and crying while the horrid nurse shouted at us.

  Wednesday, 19 August 2009 7:27 PM

  The exceptional choice of language used by Craig in this email, 13 days before his death and four days after his unsuccessful attempt, are a clear sign of the extreme anger and frustration he was experiencing towards both NF1 and Dignitas. Every day, every hour he would check the computer to see if Dignitas had an answer for him. He could not understand that Dignitas, of all organisations, could put him through such agony. His frustration at Neurofibromatosis eating away at him also just seemed to grow.

  I am so f-ing angry with this disease.

  Nobody should have to endure this disease if they are affected to the extent I am or even worse.

  I have just found more fibromas. There were already three pea-sized ones on my hands near my fingers, so today I find some on the palm of my hand.

  They are not just “on-the-surface” like some NF1 sufferers get, but entangled in nerves, the hard type. God, I just can’t keep up and in future still more growths like this.

  I will not, I cannot accept this! In some cases this condition should be seen as terminal by the medical fraternity in which case the sufferers should have access to morphine in order to terminate their lives.

  My deep desire for the badly affected ones I leave behind is that they don’t have to suffer in this undignified way; my heart will be crying for them when I am in “paradise”. I don’t want them to have to go through the anguish of having to find a “way” as I am doing.

  Plan A (Dignitas) is the preferred way, and I am only giving them a very short while, Plan B (overdose of Dormonoct – 49 tablets) did not work, I have a Plan C firmly in place, I have given it my own name, I am calling it “Plan Pravda”*

  Pravda, Pravda, Pravda, Pravda, Pravda, Freedom, Freedom, I will fight on for my Pravda!

  Wednesday, 19 August 2009 8:05 AM

  I am a peace warrior, I am fighting hard, I am working hard at my Plan C. Plan A is still best but it seems so… I deserve PEACE and I will not let go until I can fall slowly, softly, peacefully into “sleep”.

  When my dad affectionately stroked the bottom of my left foot yesterday morning and I did not feel it, he said, “Was that not ticklish?” (It’s kind of like when a GP tests your reflexes and strokes the bottom of your foot with an “implement”.)

  My dad said he wondered if this had anything to do with the removal of the saphenous vein from my left leg when I was at Great Ormond Street for my second operation. I have always noticed that my left foot/leg has a bit of a different gait.

  I found three new fibromas in the fulcrum of my arm this morning (the crux area on the side of elbow). I showed them to my dad and he said this will probably make it difficult to draw blood; my dad never speaks “junk” and knows that it is an issue.

  My dad also said this morning that society has it all wrong. How astute! I cannot even be granted my peace when I am in a terminal state for the rest of my life.

  Thursday, 27 August 2009 8:04 AM

  It has now been confirmed that 30 Dormonoct should have done the job, I took 49, story of my life…

  When I was born in 1980, my parents had just moved from Johannesburg to Port Elizabeth. With them they brought their dog, a Doberman named Vodka. He was such a gentle dog to me as a baby. Little did I know that my last days would also be spent having a favourite drink on each day which is Vodka based. Here’s to the Moscow Mule.

  This morning my fingers are getting the pins and needles sensation again, and then it switches to intense pain in the upper arm. Last night, or yesterday I should say, I had four packets of the laxative, Movicol, as I know my body, and all the indications that a narrowing is getting narrower. I won’t be crude and mention in words all the indications I have picked up.

  I am getting very weary now. I will implement Plan C (Plan Pravda) in the not-too-distant future.*

  Saturday, 29 August 2009 5:08 PM

  How is this – after what Dignitas said yesterday – and further research shows Plan C must be changed, as I cannot risk another failure. Despite the assurance of a lot of info, Plan C will only cause me future suffering, so Plan C must be altered; my God, where is the grace?

  Now even when I go to pee I bump my fingers on a tangled-up fibroma, and being on liquids for so long has lead to another haemorrhoid, a bad haemorrhoid!

  For F*^*^g hell, where is the grace for this little abused boy who wants to just go to sleep, that is his only wish?

  From: Sandy Coffey

  To: Craig Schonegevel

  Sent: Monday, 31 August 2009 6:19 AM

  Subject: today

  Hi Craig, got all your messages – being stuck out in the bush with very limited reception is terrible. I felt very far away from you. I also got your message about not wanting to see anyone today, and I completely respect that. If you change your mind, I can and will be there – you know that I am with you in spirit and love and light.

  Sandy

  x

  From: Craig Schonegevel

  To: Sandy Coffey

  Sent: Monday, 31 August 2009 8:01 AM

  Subject: Re: today

  I am going to write a thought of the day now, Sandy…

  I am pleased that you got back safely. Sandy, I love you so very much and wish I could see you, but I have to conserve my energy for the “last haul”.

  C

  From: Craig Schonegevel

  To: Sandy Coffey

  Sent: Tuesday, 1 September 2009 8:45 AM*

  Subject: thought of the day

  Society has it all wrong. To have to take my own life in this horrid way is disgusting after all the suffering.

  They say, “Oh well, he is not terminal”… Well in my opinion I am worse than terminal… I have been terminal for nearly 29 years and will remain to be badly affected by this disease and its complications.

  I hope that in 100 years people may take a grain of consideration towards this topic that needs attention. I wish this end on no man who has suffered his entire life, but this end, even though terrible in nature, is a zillion times softer than all the brutality of NF to my body!

  Lastly, I wish to quote a highly qualified hospice nurse, Theresa Stephany, who wrote: “It is insulting to assume that patients who request assisted suicide are clinically depressed. Most are just realistic. They know what lies ahead and they’d rather not continue with it.”

  15

  Ethel: Go with My Blessing

  When Craig decided to take his own life after Dignitas had not given him the go-ahead, the Schonegevels drove out to Humansdorp to tell Ethel.

  BEFORE THAT DAY THAT HE CAME HERE, he called me early one morning.


  I wrote it down as he spoke and he said, “Nana, I am lying in bed and thinking of you and all the tough times we have been through together. This disease is taking the life out of me. There is no end to it. The situation is clearly beyond prayer. I am meant to suffer. I love you and I miss you, goodbye.”

  That was the first phone call.

  Then later he told his mother and father he was going to take his life. And then they decided they must bring him out to tell me. They didn’t want to tell me.

  I remember Neville coming here one day, and I asked him how Craig was. He said to me, “Mom, Craig’s door is closed and he writes and writes and writes. And God only knows what he is writing.”

  They came and then Patsy and Neville went off for coffee. He was sitting here in the lounge.

  He started like this. I wrote it down while he was speaking.

  “Nana, the child you loved, and helped and nursed as much as you could, is growing weaker. There is no grace as far as my health goes. The doctors have just said there is another obstruction forming in the colon. My arm pains right down into the fingers. Life’s challenges are becoming unbearable.”

  Because he hadn’t had success with them in Switzerland he wanted me to know that he was going to take his life. He said if Switzerland didn’t come up with it, he knew what he was going to do.

  And I sobbed my heart out. He would stretch out and take my hand every time.

  And he told me, “Nana, I know God will not refuse me entry at the gates of heaven. All I want is peace and that is all I want. People must respect and accept this decision, which is ultimately mine. And above all I do not want doctors and nurses battling to save my life, which is why I will never use a gun. I would never slash my veins, I would never do anything like that Nana. I will take tablets.”