Mentioned by Tutu: Patsy and Neville Schonegevel supported their son Craig's decision to end his life after living with a debilitating condition for years

From the “Weekend Post” July 19, 2014 – picture by Mike Holmes

Mentioned by Tutu: Patsy and Neville Schonegevel supported their son Craig’s decision to end his life after living with a debilitating condition for years.

Neville Schonegevel and his wife, Patsy, arrive at ‘Bocadillos Bakery & Cafe’ in Walmer, Port Elizabeth separately, each carrying a copy of The Last Right – Craig Schonegevel’s Struggle to Live and Die with Dignity.

“I love how we both carry him with us,” Patsy says, clutching the book to her heart, a sad smile on her face. The “him” she refers to is their son Craig, 28, who ended his life in their Summerstrand home in September 2009 after living in pain with neurofibromatosis nearly all his life.

He is the same young man Anglican Archbishop Emeritus Desmond Tutu mentioned in his controversial call to “revisit our own South African laws which are not aligned to a constitution that espouses the human right to dignity”, published locally and internationally earlier this week. “Craig wanted to end his life legally assisted, listening to his favourite music and in the embrace of his beloved parents, Patsy and Neville. Our legal system denied him and his family this dignity,” Tutu wrote. “I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying.

“I revere the sanctity of life – but not at any cost. I confirm I don’t want my life prolonged. I can see I would probably incline towards the quality of life argument, whereas others will be more comfortable with palliative care. Yes, I think a lot of people would be upset if I said I wanted assisted dying. I would say I wouldn’t mind actually.”

Tutu’s stance has re-ignited a debate in South Africa and around the world on whether “Assisted Dying” should be legalised.

“We can’t believe Craig’s name and Desmond Tutu’s is mentioned in the same article,” Neville, 65, said. Craig – the couple’s only child as specialists advised them not to have more children – was just a year old when he was diagnosed with neurofibromatosis, a collective name for a group of genetic conditions that affect the nervous system. The condition causes benign lumps to grow on nerves – either on nerve endings in the skin where they can be clearly seen or on deeper nerves within the body.

Craig, who qualified as a personal trainer, was seven when he had surgery to remove a benign brain tumour although by then he’d had other minor surgeries. He had several more over the next few years but, faced with surgery number 15, he decided he’d had enough.

He had developed painful adhesions from the many surgeries. His parents recall he was about 26 or 27 when he told them he had found a place that would help him die with dignity. He was not depressed, they say.

“He came to us one day and said, ‘I have found my peace’. We asked what he was talking about and he said there was a place in Switzerland called Dignitas that would allow foreigners to go there for assisted suicide. You can imagine what our reaction was,” Patsy, 62, said. Given all they had been through, Patsy said she asked Craig not to do it. “He said ‘Mom, I won’t do it if you ask me like that but if I continue with the pain and suffering it’s because you asked me not to do it’.”

Neville said they approached a surgeon to discuss whether the adhesions would ever stop. By that point, Craig had not been eating solids for months. “He said, ‘this disease has raped my body’. He was begging them (Dignitas) to let him come, waiting for ‘the green light’. Every hour he went online to see if there was an e-mail from Dignitas,” Patsy said. But Craig’s age and the fact that he was technically not terminally ill, counted against him. And so the search to end his life by himself started.

“Let me tell you, it’s not easy to kill yourself. There are so many things that could go wrong,” Patsy, who carries Craig’s photograph wherever she goes, said. “He didn’t want to die violently. He wanted to be in my arms (at Dignitas) and he wanted Neville to put his arms around both of us. He wanted a gentle (death).”

On August 15 2009, Craig took sleeping pills he had hoarded “and by all accounts he should have died then but he didn’t”, Neville said.

About two weeks later, on August 29, the family went to Addo for the day to celebrate Patsy’s birthday. “He was determined that I had to get a special cake because he wouldn’t be there the next year to give me anything. Written on the cake was ‘Mom, my soft place’,” an emotional Patsy said. “We still have the cake (a death by chocolate cake) in the freezer.”

Three days later, Craig was dead.
“On the night before (August 31, 2009), I said to him, ‘Craig what are the best memories of your life?’ He remembered when he was four and we went to what I can best describe as a shack at the coast and the floors had black polish and he got all black,” Neville said. That was their last conversation.
Patsy shook her head when asked what her last conversation with Craig entailed. “She hasn’t even told me,” Neville said.

The next morning, at about 6am, Neville found Craig dead in his bed. He had taken sleeping pills and placed two roasting cooking bags around his head.

“Craig had started taking pictures off his wall (before he died). He didn’t want us to deal with these things. He sold his guitar. He planned his own funeral, his own memorial service, the music, where he wanted us to scatter his ashes – at the Shark Rock Pier,” Patsy said. “I honour his memory by going back to the pier to scatter roses in the sea.” The couple still live in the same Summerstrand home. “I want to stay but Patsy doesn’t want to. We have so many good memories there,” Neville said.

In 1998, the South African Law Reform Commission (SALC) was commissioned by former president Nelson Mandela and published a report, Euthanasia and the Artificial Preservation of Life, which included a draft bill, the End of Life Decisions Bill 1998. Nothing has come of it, but the Schonegevels hope that will one day change.

“To me, it’s about alleviating the suffering people have to go through before they die,” Patsy said. “I’m very religious and I believe in God but I don’t believe God wants us to suffer. I absolutely believe he (Craig) has gone to our Father in heaven.”

Final step out of pain, into peace

Taking my own life has been totally my decision and an act I have planned and carried out by myself. I am of sound mind and have always been. There are a number of people who will confirm this. The wait for Dignitas has become too much for me. They have not treated my parents and me in a dignified manner. Not once in the past six months have I doubted this to be my “way”. My counsellor will confirm this.

Neurofibromatosis has raped me physically and mentally for almost 29 years. This disease as well as my complications with adhesions has become too much for me. I am tired of fighting. Even the strongest of soldiers grow weak. I want with all my heart and soul, with every fibre of my being, to be at peaceful, constant sleep. I want to go to a better place now. I have lived in my own personal hell for all of my life. I have so many blessings that I am so immensely grateful for, but the time has come for me to go to a better place.

I ask people to read my book, my story, when it is published. It will show my heart, love and how I fought. I will wait anxiously above for my loved ones. If, for some reason, my suicide attempt is unsuccessful, I do not give consent to be booked into a hospital of psychological institution.
Signed CC Schonegevel – August 14, 2009

Taken from The Last Right – Craig Schonegevel’s Struggle to Live and Die with Dignity, which was written by Marianne Thamm and published by Jacana. Proceeds from the sale of the book go to the Missionvale Care Centre.
 
 
Ending his life: Craig Schonegevel ended his life after suffering from neurofibromatosis for many years.Ending his life: Craig Schonegevel ended his life after suffering from neurofibromatosis for many years.

6 thoughts on “Neville and Patsy Schonegevel remember son who ended his life: Tutu brings to life ‘Dignity for the Dying’ debate – by Karen van Rooyen

  • 19 May 2017 at 11:49
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    It’s painful reading Craig’s story, but I believe what he was going through no one could feel the same pain. We live in a world where politics makes some laws not considering their people’s own choices on life, especially the way we would like our exit to be like. But it remains, we are all different and the way we perceive life…

    Reply
  • 28 July 2015 at 11:44
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    Patsy, I am so sorry for your loss, and Tina I know what you are going through and I know your fears. Our 20yr old son, Stefan, passed away 5/52015 and like you Patsy, he was our only child. He too had Neurofibromatosis. He was such a fighter, his lifelong motto was “never give up” About a day before his passing, he was by then almost completely paralyzed, he wanted me to lift his hand. When I offered to do it for him, his response was, “Mum, I did not come this far to give up now” He had this quiet strength and was a real fighter, but Craig has said it well, “even the strongest soldiers grow weary” I do not know how much Stefan was still able to bear. Thank you for sharing your stories, I would really like to hear from both you ladies. This is a really tough journey.

    Reply
    • 28 July 2015 at 12:19
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      So very sorry for your loss, Miranda. Stefan certainly sounds like a fighter, but as Craig said… Sadly, even warriors die. I will copy your message (and email address) to Patsy and Tina with a request for them to get in contact with you. May your grief become gentle with the passing of time.

      Reply
  • 30 April 2015 at 22:21
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    My heart breaks every day I walk past your book on my bookshelf… although I have not had the guts to read it. I know it will bring great sadness to me… my 27 year old son has NF1 Neurofibromatosis throughout his entire spinal area and his internal organs – he has just come thru his second 9 and a half hour operation, and all I see is regression.

    • He is a bright child having distinctions at Fairmont High in Durbanville, and completed 3 yrs BSc with distinctions in Physic and Astrophysics
    • He then had tumours removed from his neck and could not complete his BSC Hons in Theoretic Physics
    • He had a long hard year to go from almost disabled to be able to walk with one crutch with difficulty
    • Two years later he once again managed to finish a year and competed BSC Medical Physics

    Now after this year’s op he is recovering but we know that the ops are not cures but rather a prolongation of some quality time until the next operation, to be conducted on the C1/C2 area of the spine, and this I fear is so so dangerous… affects breathing and he may land up with a ventilator. My prayers are that whatever happens there is no suffering, and in his case is I am very aware of what is going on.

    Reply
  • 27 March 2015 at 22:39
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    I’ve just finished reading Craig’s book. Very moving indeed. The family’s sincere and honest belief in his decision is a testament to its unconditional love and respect.

    Reply
    • 30 March 2015 at 09:35
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      Thank you so much. We miss Craig every hour of every day but we know that he wanted peace and we absolutely understood why he wanted it. We just hope that his story can contribute to passing legislation which allows us all to chose our own exit when the pain gets so bad. Thank you for reading his story.

      Reply

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