Towards the end of 2008, as his health deteriorated, and later, after he had made the decision that he was applying for an assisted suicide with Dignitas, Craig began fastidiously tying up various loose ends, terminating his membership of the Humewood Golf Club and Virgin Active.
He also corresponded with a few close friends, like his music teacher, Dr Howard Nock, and family, including his cousin Quinton, his uncle Brian and aunt Lynette. Patsy also corresponded with her brother Brian about the decision Craig had taken. Below is a selection of these emails and letters.
From: Brian Gilbertson
To: Patsy Schonegevel
Sent: 04 May 2009 08:27 PM
My dearest Patsy
Your message fills me with such sadness and with the renewed awareness that we are all but straws before the storm that is Life. I wish I had words of wisdom to offer you and Neville, and above all Craig, but there are none.
Every day I receive an emailed “word of the day” from some Internet source, seeking to improve my English vocabulary. I signed up for it in the dim and distant past and to be honest I rarely pay it attention, beyond a quick scan. Sunday’s word was “albatross”, and with uncanny timing it arrived but an hour or two before your email.
Apparently there are three meanings, as below. I suppose most of us could call up number one and three but it was number two in particular, the nuanced wording of that definition, which seemed to capture so well the awful burden that the three of you have borne for so many years now.
I think you know how much we, Rensche and I, and indeed our two boys, admire – indeed we stand in deep awe of the manner in which you and Neville have carried this dreadful albatross of Craig’s NF; and notwithstanding that, what a fine young man you raised and he became; and the courage and dignity with which he has borne himself throughout his long suffering.
You ask what I would say to my child in a similar situation. I simply do not know. A parent’s bonds of love and emotion must cloud, obscure, all reason. But at my great distance, I would say that Craig is now a grown man, capable of independent and rational judgment. No one knows better than he what he has been through, and must still face every day. I am sure he has agonised over this, in all senses of that word. No matter how hard and awful it is, I would try to respect his decision, and give him the love and support that he will so desperately need if he sets off down this lonely road.
I wish I could end with something comforting and uplifting, but words fail me. The few lines below have long been special to me, and will say some of the things I cannot; indeed, I am unable to read them aloud without a break in my voice and a tear in my eye.
“Remember” – Christina Rossetti
Remember me when I am gone away,
Gone far away into the silent land;
When you can no more hold me by the hand,
Nor I half turn to go, yet turning stay.
Remember me when no more day by day
You tell me of our future that you plann’d:
Only remember me; you understand
It will be late to counsel then or pray.
Yet if you should forget me for a while
And afterwards remember, do not grieve:
For if the darkness and corruption leave
A vestige of the thoughts that once I had,
Better by far you should forget and smile
Than that you should remember and be sad.
May all three of you find the strength you will need in the time ahead. It goes without saying: If there is anything that I can do, you need but ask.
From: Craig Schonegevel
To: Brian Gilbertson
Sent: Tuesday, 5 May 2009 9.35 AM
Subject: What I want both of you to know
Uncle Brian and Aunt Rensche
I have so much love in my heart for the two of you, words could do no justice. Uncle Brian, when you speak to me, the few words that you say mean so much to me. If only people thought before they spoke. Aunt Rensche, in my opinion we have moved closer the last while by our conversations. You are a wonderful and beautiful woman and I can honestly say my favourite aunt.
All my Love
C
From: Brian Gilbertson
To: Craig Schonegevel
Sent: Wednesday, 6 May 2009 11.46 PM
Subject: What I want both of you to know
Dear Craig
Thank you so much for your email. How well and movingly you write. You should have tried a short story or two, or kept a serious diary. I sometimes wish I had done those!
Now I want YOU to know YOU have influenced and enriched the lives of others in many ways, over many years. Do you remember your extensive advice to me when I wanted to buy a rowing machine a long time ago?
And your detailed instructions on how to use it correctly? And the “bicycle crunches” that you made me do to strengthen my “core” muscles? I heeded you, and am much better for doing so; but if only I had followed your advice more intensely and consistently than I did, I might today have had a physique approaching yours!
And then your swimming initiative was amazing to me; I have always wanted to swim well, and I even had a coach for a while when I lived in Melbourne, for there was a fine but largely unused pool in the basement of the building. But even with that, I could never have contemplated taking up the challenges that you did, in the open ocean and the Knysna lagoon, and I admired you for that.
And perhaps you know that Quinton ran the London Marathon two weeks ago? Who would have imagined that! I did a marathon ONCE in Johannesburg, and it was an important marker in my life, for it brought to me a painful awareness of my physical limitations, and I vowed never to try again. Yet Quinton has committed to run AGAIN next year, and he will do so solely because of and for you: He will run on behalf of an NF charity. And he will be a better and more complete man for having done so!
And then I was intrigued by your discovery of (serious) music, your judgment on Bach (my all-time favourite, even if not yours), and the development of your own musical skills. And so on, and so on…
But above all, we, my family, have admired you, so much more than words can say, for the courage and stoicism with which you have borne your personal cross over so many years. We would have given almost anything for it to have been otherwise, but your cup could not be passed. Your strength and dignity, and indeed those of your parents, throughout your suffering have taught us humility, compassion, of the frailty of human existence, even gratitude, for we were not given your burden to carry.
Today you fill our thoughts, our hearts, our prayers. May you find relief, peace and solace.
From: Craig Schonegevel
To: Dr Howard Nock
Sent: Sunday, 10 May 2009 12.22 PM
Hello Doc
Doc, because you are very dear to me and mean more to me than you will ever know, I’d like to share the following with you. Doc, this will shock you and I don’t know how I would handle being on the receiving end of this email. All I can ask is that you keep this to yourself and respect that it is a very personal decision that I have made entirely on my own and that this decision has given me true peace.
For a while now I have had discussions with George Irvine and he is of the opinion that it is the true Craig that is thinking and not a depressed or disillusioned Craig.
My health just does not give up and I should have already been to Cape Town to have the operation to my arm. (I feel it has grown in size since I’ve had the MRI and it is causing more pain as well as giving me pins and needles in my fingers all the time.) I have been unable to have the op because my colon is playing up again. I was in hospital again for an obstruction 10 days ago, which thankfully passed this time. I am still basically on liquids. Adhesions have formed again and it is just a waiting game until it leads to surgery again. The scar down my entire abdomen has been cut six times now and the irony is that each time more adhesions form that again lead to surgery. There is no cure for this problem, like there is no cure for Neurofibromatosis, the disease that I have.
I have decided and this is the part that will shock you… to go to Dignitas Clinic in Switzerland, which is an assisted-suicide clinic. I have been in contact with them and am submitting medical history and other forms.
If they accept me (subject to certain conditions) I get a “green light” to travel to them and be assisted. This is legal in Switzerland. The thing is that my parents will be travelling with me and may face legal issues when they return. They respect my decision. They have been advised to approach senior legal counsel. There have been a few cases in the UK before, Daniel James went there and his parents were charged but the case was later dropped.
After 12 operations and the pain I have experienced and the imminent surgeries that await me, as well as all that goes with my disease, all I dream of is peace. And to not have the true Craig further and further “raped” to the point that what is left of him will be gone.
Love
Craig
PS. Doc, if I do get the “green light”, please
accept that I have included you in my Will.
From: Dr Howard Nock
To: Craig Schonegevel
Sent: Sunday, 10 May 2009 10:21 PM
Dear Craig
I was deeply saddened to read your email but at the same time I appreciate that you have found a peace that I’m sure you have not known for a while now.
I feel very touched that you have shared this decision with me. At all times when you have shared your medical problems with me, I have been struck by your courage and strength and how you still take time to think of others. So you have my utmost respect.
Please feel free to email me at any time with any thoughts you may want to share.
Please know that my thoughts are with you and your family.
From: Bruce Robertson
To: Craig Schonegevel
Sent: 21 June 2009 07:30 PM
Subject: My Friend
Dear Craig
First off, let me tell you how much I appreciated your call on Wednesday – most especially because you chose me to share your thoughts and decisions. I have known for a long time that you are ill, and about the nature of your condition. And so, I have respected your personal space, and have only enquired rarely about how you are. So, your call came as a surprise to me, but what you had to tell me was perhaps less of a surprise. And no less of a surprise was the manner in which you shared these most personal thoughts and feelings with me. Let me explain.
About five years ago I joined Humewood and my first encounter with “competition” golf was with you, George and Doc. I had serious trepidations as I had only played by myself for about two years. I really did not know what to expect – other than making a fool of myself – especially where one of the four-ball had a single handicap, compared to my 24. And that single handicap was you. And you were so gracious and so supportive through the many rounds we played together. It was a very special time of my life.
Thus I grew to know you as someone with respect for others, with a very rational dispensation. Your summing-up of your health condition and your plans to deal with it were thus quite in character with your personality and your courage.
I cannot begin to imagine what you have been through these last few years of your life. Yes, last year I knew what it is like to have cancer – but fortunately for me, it was one that could be dealt with simply by surgery. But after Doc told me about your condition, I read up about it and only then realised that it was an incurable illness. And that, added to your colon problems, obviously, would make future life for a young man like you untenable.
And so, in these last few years of being ill and having to suffer beyond anything that others could imagine, you have, with great courage, decided on ending your life. I wonder what I would have done if I had been in your situation? Probably, I would have made the same decision because, in a sense, Susan and I already have. We have both made Living Wills that request that if we are beyond repair, we not be kept alive artificially and that all the machines be switched off. So, in a sense, we have already taken the decision that if we could not continue to live through our own means, we should be allowed to die.
So that brings me to the question. We all know that we are going to die at some time in the future. What we do not know is how and when. Should I thus sign a document that says, “When I get ill, I must be put away”, not knowing when that might be?
I have, until now, not brought God into our debate. However, I know that you are a true believer, and the fact that you have been meeting George Irvine on a regular basis is of great consolation to me. I have great respect for him and his views and have no doubt that he will counsel you well in this difficult time. I pray that through your meetings with him you will make the right decision.
Having said that, it would seem to me that you have already decided. I have read about Dignitas in Zurich and I must say to you, as a friend and someone who loves you, please think again. I know your condition is incurable. I personally find it hard to believe in miracles. But I know that you were created by God and conceived by your parents to fulfil an important role on earth, even if it be at great personal expense to you.
You have so much to offer the world as Craig, alive, albeit suffering, than a Craig who we once knew.
Go and read about Stephen Hawking, perhaps he can be a role model to you. In saying this, I am not downplaying what you are suffering, and have already suffered and are likely to suffer. I know that you did not reach your decision to go to Switzerland without a great deal of pain and courage.
I would never judge you for deciding as you have, but I pray that you will change your mind.
If, however, you decide to follow your will, please let me know. I will not try to talk you out of what you feel, but I would like to bid you farewell.
May God, as in The Father, The Son and The Holy Ghost, bless you.
From: Craig Schonegevel
To: Dignitas
Sent: Sunday, 21 June 2009 8:11 PM
Subject: Request for Accompanied Suicide
Dear Mr Minelli
Craig Carstens Schonegevel: Membership No: 254.80.471.
Request for accompanied suicide
I reluctantly write to you with the knowledge that you and your organisation are facing a number of challenges and that you must be fully extended in dealing with a great amount of work.
The purpose of this communication is to establish whether Dignitas is able to give me a rough indication by when I should know whether or not I have been given the “green light”.
My situation is that I have a growth on my arm, very close to the ulna nerve, which is causing considerable pain and I need to decide if and when I am going to have surgery. The recovery period is six months and I would like to avoid this surgery depending on how long I must wait before knowing whether I am given the “green light”.
Furthermore, I have been living on liquids for the past seven weeks in order to avoid another obstruction in my colon and the probable need for further surgery.
Ideally, I want to have assisted suicide in Switzerland with the help of Dignitas as soon as you give me the “green light”. I eagerly and respectfully await your response.
Yours sincerely
Craig Carstens Schonegevel
South Africa
From: Craig Schonegevel
To: Dignitas
Sent: Thursday, 25 June 2009 18:42
Subject: Fw: Request for Accompanied Suicide
Dear Mr Minelli
I refer to my email dated 21 June 2009 and ask you to indicate by when you hope to respond as I am becoming increasingly anxious.
Thank you.
Yours sincerely
Craig Schonegevel
From: Dignitas
To: Craig Schonegevel
Sent: Monday, 29 June 2009 12:29 PM
Subject: Fw: Request for Accompanied Suicide
Dear Mr Schonegevel
We thank you for your letter, in which you ask us to prepare an accompanied suicide and with which you enclosed all the necessary documents.
Your request has been sent for assessment to one of the doctors who work with us. The process will take some time. As soon as we receive the doctor’s decision that he is ready, in principle, to write the necessary prescription for you, we will send you the so-called “provisional green light”.
Following this we can discuss the dates for you to visit the doctor, and then we can discuss a subsequent or deferred appointment for your accompanied suicide.
If you still have any unanswered questions, please do not hesitate to contact us in writing or by telephone to resolve them.
From: Craig Schonegevel
To: Brian Gilbertson
Sent: Tuesday, 23 June 2009 3:33 PM
Subject: cocktail
Hello Uncle B
I thought of you earlier. Let me explain.
PE has once again opened a five-star hotel, the Radisson Blu. I went there today for a cappuccino (a skinny decaf I may add). Not quite up to the drink of champions, Americano, as my Godfather drinks!
Anyway, while waiting I looked through their cocktail menu. Then I saw it! The drink that I will have the evening before I fly to Zurich. Some may go for a grand meal but since I have been on liquids for the past eight weeks I shall have a grand drink! Which will knock me for a six, as I no longer have my glass of red in the evening since being further “hammered” with my health over the last few years.
Its name – Call Me a Cab – looks well deserved from the long list of ingredients.
You are loved
Craig
From: Craig Schonegevel
To: George Irvine
Sent: Wednesday, 24 June 2009 12:51 PM
Subject: hello
George, I just want you to know that you are all that I imagine God to be.
Love
Craig
From: George Irvine
To: Craig Schonegevel
Sent: Wednesday, 24 June 2009 4:12 PM
Subject: Re: hello
Craig, thank you. Like yourself, I am a fallible human being. George
From: Lyn Dickason
To: Craig Schonegevel
Sent: Wednesday, 15 July 2009 6:03 PM
Subject: A verse
Dear Craig
With no electricity most of this morning it was great to receive an SMS from you.
With so much on my mind I took the liberty to do what I enjoy most and that is writing some verse, this time about you. I hope you don’t mind but if you do then anyway Uncle Pete has seen it and no one else, so if you dislike it then there is no harm done. Here it is:
“My Heart Is Young”
Within me is a young man’s heart
With longings wild and free
Adventure calls out to my feet
Yet is denied to me!
Careers, ambition, partnerships
My mind calls out for these,
I start, I falter and fall away
Will someone tell me please –
Why me?
My youth was marred with doctors’ calls
With hospitals and ops
And somehow as I grew
Ill health never stopped
My parents’ stress was obvious,
Their love unending, kind,
Their search for a solution
Was one they couldn’t find.
The fibroids grew and grew,
Their dominance was all,
My life became a living hell
All ambition had to fall.
Now my days are heavy,
My nights are long, alone,
My soul despairs of life itself,
My mind feels old age grown.
And yet I have a young heart,
A young man’s love unfilled,
I wish to call it all to stop
My here forever stilled.
My hope lies in a distant land,
With doctors kind and sure,
Their liquid that will lull to sleep
And life will be no more.
So, when you hear my story
No censure put on me
For until in my shoes you walk,
You do not walk with me.
So wish me peace and endless sleep,
Wish me hope and love,
Wish me safe in heavens’ arms
Forever blessed above.
From: Craig Schonegevel
To: Lyn Dickason
Sent: 15 July 2009 07:59 PM
Subject: Re: A verse
Aunt Lyn
That is sooo beautiful. You are so talented! You really, really have a heart that talks and is able to show such empathy (something so very rare). It has touched my heart and forever will.
I love you
C
From: Lyn Dickason
To: Craig Schonegevel
Sent: Friday, 17 July 2009 2:58 PM
Subject: Fibromas
Tell me how did you discover the new fibromas on your back? Did they hurt, could you just feel them or what? Generally do they hurt, itch, impede or how do they make their presence felt?
From: Craig Schonegevel
To: Lyn Dickason
Sent: Friday, 17 July 2009 4:05 PM
Subject: Re: Fibromas
Aunt Lyn
I think you will be amazed when you see the photos. They are so clearly seen with the correct lighting I have well over 100 on me. With my head shaven you can see the big one (the size of a tennis ball) that makes my head look strange. All fibromas grow on nerve ends. They are only removed if they are malignant which is seldom the case, cause severe cosmetic problems or pain… like the one on the back of my head next to the brain-tumour scar.
It was so big I couldn’t even lie with my head on a pillow (on my back position) or the one on my foot, which prevented a normal closed shoe from fitting on it (since it was removed, a new one has started to grow on the same nerve, it’s not too big yet).
The thing is, as you know, some nerves are more important than others… like the ulna nerve where the squash-ball size one is on my upper arm. I have a LOT on the lower arms and wrist but some are very small. The book about my life will show well the contrast between the clothed Craig and Craig in underwear. Those on my spine and hips are average sized and can only be felt when they are touched by say a shift in lying position in bed. The arm is another story. It causes lots of tightness in my biceps, triceps and at times gives me pins and needles in my fingers. When I take off my shirt or it hooks, or I can feel it when I am soaping myself in the shower. Folding my arms I can feel a sort of electric shock in the whole arm right into the fingers.
love
C
From: Craig Schonegevel
To: Michael Quinton Gilbertson
Sent: 7 August 2009 17:52
Subject: Tks
Quin
For all that you have done, for all that you are doing, for what you will do, I thank you with every fibre of my being. You have a beautiful heart.
I have created my own “green light” as the manner in which Dignitas is dealing with me is appalling. Know that I will keep you in my heart always.
C
From: Michael Quinton Gilbertson
To: Craig Schonegevel
Sent: 7 August 2009 07:25
Subject: Re: Thx
Dear Craig
Never have I been more lost for words when trying to write an email. I want more than anything to plead with you to wait at the red light but I know this would just cause you more pain.
You are more of a man than I could ever be.
From: Patsy Schonegevel
To: Brian Gilbertson
Sent: 12 August 2009 12:58
Subject: Thank You
Hi Brian
Thank you for making a special trip to see Craig.
Coming home from the Radisson Hotel this afternoon, Craig and I were both in tears. Craig just carried on saying what a beautiful heart and man you are. I could not agree more. Thank you for helping us to deal with this situation. The days are very long here at home.
You remain my soft pillow to fall on and I could not love you more.
From: Brian Gilbertson
To: Patsy Schonegevel
Sent: 12 August 2009 08:34
Subject: Re: Thank You
I am so pleased I could see you (pl). Am filled anew with admiration and awe for how you (pl) are dealing with this awful situation. What a fine young man C is. Mature and reflective and with such dignity and gravitas.
We will feel some of the anguish of your night in Gethsemane.