The Last Right

by Marianne Thamm

  Sandy had asked Neville in an email to recount events surrounding Craig’s first attempt at taking his life on 14 August 2009. This was his reply.

  I WOKE UP AT ABOUT 5:30AM thinking that I had heard a noise from Craig’s room. I opened his door and found his limp body pinned between his bed and the bedside pedestal.

  Was he alive? Was he injured? I pulled him onto his bed and I could see there was life.

  “Craig, are you okay? Craig, Craig!” And then he slurred, “Forty-nine were not enough.” This is not what he wanted! This was not what I wanted!

  After many months of grappling with Craig’s wish to end his life, I had conveyed my support to him and now he had been unsuccessful. I wondered what physical and emotional damage he had done to himself. How was he going to cope? How was his mother going to cope?

  I felt no real urgency. After all, Craig had wished to end his life; a decision he had not taken lightly.

  I called Patsy from our bedroom and phoned George Irvine. Who else would I turn to under these circumstances?

  But what now? Was it defeat or fortune or misfortune? Had he been cheated? He had fought so bravely for so long and with such commitment. And now this attempt had failed.

  Patsy was deeply shocked by what had happened and by the condition Craig was in. Instinctively I knew that his life was not in danger for the moment – 49 pills were not enough. I knew also that it was only a matter of time before he would succeed.

  I remember wondering if Patsy would survive all the heartache and stress that goes with the destruction of an inseparable relationship between mother and son.

  George arrived quickly and with him he brought calmness and love. Craig was not fully conscious as we carried him to the car. This was a short journey to a medical facility, unlike the very different journeys Patsy, George, Sandy and I had each walked with Craig and indeed he walked with us.

  The doctor on duty was outstanding. He was non-judgmental and caring. After he was stabilised, Craig came home again.

  14

  Craig: In His Own Words

  During the four months that Sandy spent interviewing and photographing Craig, she often emailed Craig lists of questions or thoughts that came to mind. The following is a selection from their correspondence.

  From: Sandy Coffey

  Sent: Monday, 29 June 2009 2:08 PM

  In all mainstream religions, including Buddhism, suicide (assisted or not) is a no-no, with regards to afterlife. Are you worried about that?

  x

  From: Craig Schonegevel

  Sent: Monday, 29 June 2009 7:10 PM

  No, I feel more at peace now than I ever have in my life with regard to both my health situation, as well as religion and my relationship with the heavenly Father in my heart.

  The fact that this is assisted suicide does not make me want to “sugar coat” things and say that it is not suicide because ultimately it is exactly that. By drinking the barbiturate I am taking my own life.

  Firstly, let me state that I believe that what I have decided to do is in a way different, not correctly or incorrectly, but different. Often with suicide the person is looking through a “frosted window” and acts out of desperation or a depressed mind. I am of sound mind and fully believe that this is the way to go.

  So too does the depressed person believe fully that this is the only option. In this case people have no right to judge this person, because they have not lived his/her life and do not know that this act was right to him/her in his/her heart and head.

  In the case of the depressed person, though, my wish is that they would have had time to work through their issues with a professional and perhaps by taking medication to help them. If they then still feel that this is the only way to go then it is their personal decision.

  The last thing I want to do is end my life in a violent way, e.g. shooting myself, because if there is a botch-up then I will be worse off. Also the anxiety that goes with this is great. I have had enough of anxiety with my condition to add more in my passing. So too has enough violent hurt been done both to my body and spirit. I don’t want my body to be violently hurt, whether it kills me or not, as my body and spirit has been repeatedly subjected to great violence.

  To answer your question. I know that for me, in my heart, I fully believe that access into the afterlife will not be influenced by suicide, both in a depressed state or sane, assisted or not. In the end, I fully believe this to be the right decision.

  I could be wrong though, and I believe that in the end then it will be just that in God’s eyes, a wrong decision. God does not punish us when we make errors of judgment throughout daily life.

  I also believe that there are some things that God cannot change as much as He may want to. It is then that we must trust our heart and follow what it “whispers” to us to be the way.

  Hope this gives some indication, Sandy. Please forgive me for the long-winded response.

  C

  From: Sandy Coffey

  Sent: Monday, 29 June 2009 8:33 PM

  Can you describe a “perfect” day if you could have it?

  And then describe your day now?

  From: Craig Schonegevel

  Sent: Tuesday, 30 June 2009 10:39 AM

  A perfect day for me?

  Sometimes we catch or experience a glimpse of true happiness and fulfilment. The thing is I wish that these moments could be bottled and we could live in that feeling or experience constantly. This is not reality though, and each and every one of us must make the best of what we have at our disposal or what we can do to contribute.

  I experience moments of true happiness very differently now to before. When I lie down on my bed and I am free from emotional and physical pain with my mom beside me, for that short while I feel totally at peace and this is what I believe the place that I will be going to will feel like constantly.

  So, my perfect day would require this feeling constantly, feeling total love, acceptance, peace, being pain free, being anxiety free and not having to live in the box that NF1 has put my mind and body into where I am limited to a fraction of the person I once was physically and emotionally.

  A perfect day would also entail people being understanding and respectful of the difficulties I face and allowing me to cope in the way that is best for me, not what they believe is best for me.

  My day now?

  Having taken the decision I have has brought me a peace that I have never known. Sometimes I get very anxious though; I wish that things would move faster. I get anxious that I may not get the “green light”, although a large part of me knows that I will.

  If I don’t, I have to go for arm surgery, which will have a six-month recovery period. My true self (my spirit/heart) will have a much longer recovery period though. The recovery period is for the rest of my existence on earth, that is the extent to which the constant invasive surgery affects my being.

  In a perfect day I could eat normal foods as well as not be concerned about it potentially causing an obstruction in my colon, which ultimately gets me under the knife again.

  In a perfect day, I would not have to subject my family to the torment of this disease, because ultimately my mom and dad are carrying the burden as well. A perfect day would entail my heart being held by loving hands that “get” me completely.

  A perfect day for me would be lying on the bed at Dignitas and know that peace, to know I was loved by those in my life who matter to me.

  On that day I would like to know that I did matter, that I did make a difference. On that day I would like those special few to know that for the first time in my life I have found something that I can do that cannot be taken away from me by Neurofibromatosis.

  I would like them to know and experience my peace, whether they are in the room or not. Whether they know the exact day or not. I would like them to know that I am okay.

  From: Sandy Coffey

  Sent: Friday, 3 July 2009 5:44 AM

  Given the amazingly beautiful and close relatio
nship you have with your mum, you know your assisted suicide is going to be the hardest thing she will ever have to face. Can you give me your thoughts on this?

  From: Craig Schonegevel

  Sent: Friday, 3 July 2009 12:53 PM

  This action will break my mom more than I will ever know. I can only take the strength she is displaying as a lesson in that the hardest thing of all is letting go of somebody you love with your whole heart, your whole life and for whom you live and to allow them to take this action.

  I have said in my long letter to my parents (which they have read) that it is okay to say I have had enough, whatever that may personally mean and if it helps. It is not admitting defeat.

  I have told my mom how the “angel love” that she has given me all her life was so pure and without it I would have perished long ago. Without that love I would have been a wreck who never experienced total love as God intended.

  So, I am privileged to have received such love as most don’t and that in fact it was good that other people never gave it as it could never have matched up. I can only hope that the same feeling of love (she has given me) and how beautiful she is crashes over her daily, numbing her mind.

  She, like me, is a private person. I know she, like me, loves the sea. I know she, as she has told me, does not want to carry on living in the same townhouse and complex that we currently do, that she needs a new beginning.

  She also has said that she wants solitude afterwards. I have told her this is okay and to ignore people who say this is wrong. I dream that she can move into a flat like at The Bay or Summerstrand No. 1 complex and look at the sea constantly and be left alone by the interruptions of townhouse-complex living.

  I hope with my whole heart that with each wave that breaks outside her windows is my inconceivable love, soul medicine that is coming to thank, comfort her, love her, hold her. That like the sea our love is constant even though I am not here.

  From: Sandy Coffey

  Sent: Friday, 3 July 2009 5:46 AM

  Can you tell me the moment you knew there was something seriously wrong with you?

  What does Fear mean to you?

  What does Courage mean to you?

  From: Craig Schonegevel

  Sent: Friday, 3 July 2009 12:17 PM

  As I am not a specialist in the field of the mind and how it develops, I do not know at what age a human can take in or sense things. So, I believe it was much earlier than I answer you, but to me this was when I knew serious things were happening to me.

  I remember having the most terrible headaches at ages five, six, seven and all the vomiting that went with it. How my mom had to phone the library and apologise for books spoilt by vomit.

  Unfortunately there were those who did not pay attention to my mother’s instinct when I was having severe headaches. She just knew that there was a very serious problem.

  Somehow I ended up in Dr Wickens’s office for the first time and he suspected a brain tumour and said, “Book a plane ticket to Cape Town when you leave my office. I am phoning the professor at Red Cross now!”

  When we left his office and entered the lift, I sensed there was a big problem with me. I did not understand the French that the adults had spoken but my spirit knew. As the lift rode down, so too did the tears from my eyes come down as I knew I was very, very sick.

  Fear has taken many forms in my life and I suppose many children have the same fears, like of the guys at the school, baddies, who inflict hurt like violence on the world.

  The older I have become, the more my fears have tapered off into one: I fear Neurofibromatosis (mainly because I am one of those who falls in the group with life-threatening problems).

  I fear its unpredictability. I fear the constant growth of more and more fibromas on my body, because ultimately with every one that grows on the nerve end, the chances increase that it’s a major nerve.

  I fear my stomach condition, the adhesions that lead to the most destructive colon operations, both for my body and mind.

  I fear more of the current suffering I experience and will experience. I fear dying in pain, from whatever form of death. I fear living with Neurofibromatosis and the colon condition that I have, [what it] has meant for my life and will still mean in the future.

  I fear solid food because ultimately it is the cause of blocking in the narrowed section of colon that has formed. So, I take in mainly liquids leading up to Dignitas.

  I fear current pain, more pain, suffering and imminent surgeries.

  Courage, to me, means taking control of your life and ignoring what the masses and some friends say and taking the action that you know to be right and follow through.

  Courage is also admitting your faults. Also it means loving somebody, as well as loving them enough to let go of them.

  From: Sandy Coffey

  Sent: Friday, 3 July 2009 5:41 AM

  How will you like to spend your last 24 hours on this earth?

  From: Craig Schonegevel

  Sent: Friday, 3 July 2009 7:12 PM

  A time of total peace with mind and body. Not to have a “bedtime” as such but if any one of the three of us falls into a sleep it would be okay. To keep conversation in line with what our hearts and not heads are thinking. To listen to my favourite classical music albums/pieces, whether in the background or other times, as the focus.

  To look out on nature (the Alps hopefully) or a picturesque view and just hold one another or listen to the music quietly. To just lie down at times holding hands, breathing.

  To go for a walk in silence breathing in the clear air. To drink hot tea at a fireplace and just ponder whilst staring into the flames. To talk of how we will hold each other until we meet again.

  From: Sandy Coffey

  Sent: Wednesday, 8 July 2009 10:55 AM

  Can you tell me what it feels like to finally have some control over your life?

  I know you don’t want to think about it, but if you don’t get the “green light”, what will you do?

  From: Craig Schonegevel

  Sent: Wednesday, 8 July 2009 5:47 PM

  If I don’t get the “green light” I will make a plea to Mr Minelli. Even if it means that I will have to fly over to Switzerland to have a meeting with him. I will just talk from the heart to him, not a planned speech, just from the heart and ask him to listen with the heart. If this does not work I will have to find a doctor who has a heart for my suffering and wishes to help me privately.

  He must act out of free will, it will be a great risk to his career and future, but all I will be able to say from my heart to him is that my soul will be eternally grateful as I hug him with thanks. I will sob in my heart with thanks.

  For the first time in my entire life I now can be in the driver’s seat. That brings peace, comfort, certainty, rest and bliss. The “green light” has not yet appeared and that brings uncertainty but once it has shone, I will follow it to this state of inconceivable bliss.

  From: Craig Schonegevel

  Sent: Sunday, 12 July 2009 6:48 PM

  Sandy

  Just to let you know…

  Today I took down more beautifully framed pictures of my past coping mechanism (swimming) from my wall. I will be buying two poster-size blank cardboards tomorrow and be writing a mantra I have made up to help me cope to get to

  Switzerland. My dad walked into my room while I was doing it and seemed angry with me. (I think this just makes the situation more real to him and he battles.) I battle in my own way too and have to do this to cope.

  He (my dad) then said I was going to damage the frames by how I was lying them down. (I think he is honestly just battling and not angry with me.) The swimming posters were beautifully framed at Keith Johns. I will be donating them to a charity shop tomorrow and put the personal mantra up. I will use a big permanent marking pen.

  This waiting is starting to really get to me and I can only hope I can cope if this waiting must go on any longer.

  From: Sandy Coffey

  Sent: W
ednesday, 15 July 2009 5:20 AM

  You spoke about having a girlfriend – can you tell me about your disease and how it affects your hopes for a beautiful relationship with a significant other?

  Have you ever felt beautiful? If so, please tell me about that.

  Have you ever felt at peace? If so, can you tell me about that?

  This question may be difficult: You spoke about being teased and bullied and rejected as a school child. Please can you tell me about that?

  Can you describe to me your relationship with your dad?

  From: Craig Schonegevel

  Sent: Wednesday, 15 July 2009 12:40 PM

  I have always (up to a point) believed that love, realistic love, would help mend a heart that has been battered by this disease. That it would shelter me from the cruel world at times of turmoil in my heart, would love me for my heart, a heart that I don’t believe many are able to see. I now realise that maybe I am lucky (if I can have an assisted suicide) that I have experienced love with my mom and being understood.

  Craig at 10 months with Patsy

  Neville’s favourite photograph of Craig

  At 3 months with Neville

  Age 5 with Nana

  Age 5 at Blanco

  Age 4

  6 years old

  8 years old

  Craig with cousins Jason and Clayton

  Craig in 1997

  A clearly visible fibroma on Craig’s upper arm

  © Sandy Coffey

  Scars on Craig’s head and café au lait marks

  © Sandy Coffey

  Scarring clearly visible on Craig’s head

  © Sandy Coffey

  Scars on Craig’s stomach – the result of 6 operations