Craig Schonegevel and his fight for his right to die.

I was asked by Craig and his parents to document his journey - a wish to end his own life.  I spent 4 months interviewing him on his thoughts and his opinion on the right to die.  We became very close over that time and I got to know him on a very deep and profound level.  In addition to the interviews, I also photographed many aspects of him and his life.  This is the Eulogy I delivered at his Memorial.



TO CRAIG –
I only knew Craig for four months and this is what I wrote in my diary soon after meeting with him.

“I feel profoundly sad about Craig today. It is as if I cant really come to the sense of it all. That he is going to die soon. That he can simply choose a day, fly to Switzerland, and leave this earth quietly and with dignity.

Some days I can feel his need for peace and other days, I want to shake him, and say, look at the beauty in a sunrise, the magnificence of a rainstorm, and the magic of a rainbow. But I think he has seen that, and felt that. All he has left is pure love for his mum and dad and an overwhelming desire to free himself of his body. How can that happen to someone?”

Today – we stand here in memory of Craig.

I want you to remember if you can, how you felt with horrible numbing pain. Then I want you to imagine that this pain is a frequent consistent monstrous visitor. With each operation, with every new discovery of yet another fibroma, is the onset of that pain. Knowing too, that there is no cure, and very little relief. If you can, take it one step further, - imagine that as you get older, the frequency and intensity of that pain increases. That the fear of having to face another operation, another violent assault on the body will never end.

That was Craig’s physical life for almost all of his 28 years

Craig and I spoke a lot about the word terminal. He said having NF It is like having a terminal illness – there is no cure for NF – the only difference being he looked well – Ironically he had a strong body. He was an U14 Provincial golfer, he studied and qualified as a personal trainer after all - and on looking at him, he appeared in good health. But under this all, was a disease that ravaged him day by day.

As George mentioned, four months ago, I was asked by Patsy and Neville and Craig to hear and document Craig’s story – of his wish to end his life at the Diginitas Clinic in Switzerland, where euthanasia is legal and the promise of such is dignified. I have no idea why I agreed. Except that I knew I would and that I should.

Craig and I met and for these last four months, we have been in daily contact. We met often, we talked, we have laughed, we have cried. we had photographic sessions, and he became a constant in my life. And as you can imagine, I had many questions for Craig.

He told me upfront that there was nothing I couldn’t ask him., that there were to be no barriers, no holding back, and in turn he would give me total honesty. I knew then that this series of conversations would be both easy and very, very difficult. Easy, because he made it so, and difficult because of his intentions and my preconceived ideas on suicide.

One of my first questions to him was why he wanted to write and publish his story? Why did he have a need to share it? He told me that he wanted very badly to show that suffering can get to a stage where it is simply too much. That even the strongest soldiers can grow weak, and that suicide does not necessarily mean that a person is insane or depressed or both. He wanted to highlight his disease – Neurofibromatosis, and all the implications of living with it. He wanted to help others who had a severe form of NF understand this disease further.

And now that he is gone, I am left knowing that his suicide was a sign of immense courage and not of weakness. It was a highly considered decision based on the acceptance of the inevitable. He just wanted peace and rest.

I have thought often and hard about whether I should have tried to change his mind. Isn’t it a moral obligation as a human being, a caring person? On reflection, I have this to remember, every time, I feel I could have changed his decision. Very early on in our uncommon dialogue Craig looked at me squarely and said, please do not think that it is your role or right to change my mind. Please promise me that you wont try”. And so I never did – rightly or wrongly.

All I could do was to open my heart, and my arms, and suspend all judgment forever. I hope you can do the same.

During our many conversations, over biscuits (which we never ate – Craig was on liquids – fearing blockages and subsequent operations), and me because I was too busy listening – we covered all sorts of topics – from life to death and God and heaven. He spoke with clarity and with insight of a wise soul. Our relationship transitioned very quickly from story teller/writer to a deep and very meaningful friendship that was bathed in honesty, respect, and love – our friendship reminds me and will continue to remind me of the early morning gentle light.

He was extraordinary.

Instead of leaving the Schonegevel home feeling dark and down, I left leaving crystal clear and full of love and very blessed. I was always so sad inside but he seemed to up lift me, and showed me that it would be ok, that he was strong and that he wanted peace in heaven.

He has changed many of my preconceived, sometimes arrogant perceptions on life and love. He has certainly altered the way I am parenting my two young sons. I feel kinder these days and when I feel the need to shout at my children, I hear Craig’s voice saying” Go easy, Sandy, there is another way to do this, a gentler way”.

A lot of this has to do with me experiencing and viewing Craig’s relationship with Patsy and Neville and indeed Nana – Craig’s granny. With Patsy’s love and Neville’s guidance, Craig learnt about acceptance and about non-judgment, and about manners, and values and humbleness.
I have seldom seen such attributes under one roof. Patsy and Craig were not just mum and son – they were and still are soul mates forever. They gave each other undiluted, unselfish, pure love. What a gift for me to see. And Nana – all those beautiful stories that you wrote for him whilst he a small child in a big London hospital having his kidney removed. You are magnificent.

I asked Craig once whether he thought that his intended suicide was selfish – knowing what pain it would cause Patsy, Neville, and his whole family. And perhaps all of you? He replied, and I read, “The greatest most difficult unselfish act of love is to love someone so much that you can let them go and release them. I have told my mum how our “angel love” that she has given me my whole life was so pure and without it I would have perished long ago. And that our love is like the sea – everlasting and constant, even when I am gone”

Patsy and Neville have walked every operation, every stitch and cut, every pethadine injection and every cry of pain with him, and whilst it might seem inconceivable to us that he has taken his own life, we have not walked one step in their shoes. We simply do not have any idea and therefore, have no right to judge,

Craig wanted so badly to die in the arms of Patsy. He wanted to go to Switzerland, to the Dignitas clinic where he could take his own life, in a dignified manner. But Dignitas let him down. After one or two emails, they stopped answering him. He waited with hope and anticipation of a Green light and they never bothered to attend to his case with any form of respect. So eventually, after months of that traumatic waiting, he quietly took his own life.

I may have known him for only four months, but in that time, I discovered the courage of a lion, the heart of a lamb, and the love as expansive as the blue sky. I loved his quirky humour and his playfulness which came out every now and again and I admired his razor sharp thought processes and intellect. He may have been very thin in the last few months, but he had the strongest hug around.

And I need to tell you about his Moscow Mules – as he put it – Most afternoons, Craig and Patsy would make their way down to the Radisson Hotel, and enjoy one or two “mules” – delicious cocktails that had a kick to them! I think those were quiet peaceful times that had a kind of magic to them. Today, after the service, Patsy and Neville have asked that as many of you join them at the Radisson, for refreshments, and for the brave, a Moscow mule – Craig would have loved this.

Today I stand here before you and love and embrace Craig and all that he stood for. He was a privilege and our time together was a true gift.

I want to thank Patsy and Neville for sharing Craig with me. I felt quite selfish sometimes, knowing our precious the time was. I was acutely aware of how every second he spent with me, was one less spent with them.

And Nana – your sadness is tangible but so is your love.

To George, walking softly with Craig on his difficult journey is perhaps the kindest thing a human could ever do for someone else. He loved you and told me that the feeling he had around you, was the closest to what he considered heaven to be.

To Craig – my beautiful friend, rest well, gentle soul – until we meet again.


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