Mom, angelic Mom, thank you for always telling the doctors that your little boy had a problem with headaches that you, Mom, were not imagining.
I feel no anger towards NF. It has just got to a point where enough is enough and I no longer want to be abused.
Mom, thank you for always believing me when I told you things about my body and how it feels. Like how I told you about my colon, months before it happened. I know you and Dad believe me about my arm. Even pulling a blanket that brushes over it causes pain and how now, at times, I feel it in my fingers.
Dad always said that I never complained without reason.
The big fibroma on my scalp at the front of my head causes throbbing pain at times; thank you, Mom, for believing this and that I am not trying to find things that are wrong or that I am constantly trying to scan my body.
If I could leave a thought or lesson behind it would be that it is okay to sometimes say, “I have had enough”, particularly when a person has had a long period of fighting, whether physical or emotional.
I also would like people to realise how stupid it is to sometimes say, “I know exactly how you feel.” We all have different pasts and emotional make-ups and live with different challenges. I know everybody has problems, but some are indeed greater and everybody deals with situations differently.
If I could ask one thing it would be that people should be slow to judge me. For them to try to imagine the possibility of a challenge that is not a constant thing, a challenge that is variable and one that has and is affecting many parts of my body.
Perhaps if I had a disability that was constant I would have been able to endure it more, but I cannot keep adapting.
I would also like people who have relatively normal bodies to be more consciously thankful for them. Some people want things like face lifts and enhancements when they are perfect. Yes, if it makes you happy then do it, but be thankful firstly for the blessing of a disease-free body.
Please tell people not to judge a man until you have walked in his shoes, as George [Irvine] put it. I feel that my challenges have not made me stronger, they have made me weaker and I want to go to sleep before more of who I am is taken.
Dad, please take Mom for a skinny decaf cappuccino once a week at Woolies. She loves their cappuccino’s taste and all that foam so much. Also, remind her to use her stamp card to add up to a cappuccino on the house. I used to love going weekly with Mom for one, but as NF further hammered me, we have been doing this as a take-away for the last two weeks.
The two of you will have to do whatever it takes for you to cope afterwards and whatever maybe, it’s okay and it’s your right; all I can say is thank you for listening to my heart talking and not judging me or saying something selfish or using some warped psychology.
Dad, thank you for the letter. All of those things were learned by watching and observing you so, it’s more of you and how you raised me than my own doing. Would you please make allowances in your wills for a substantial amount to go to a NF1 Association in my memory and let them know how I died, so people can see what NF can lead to in certain individuals?
I ask also of you the following and I obviously will never know if you have done this, but Mom has in fact given me her word. When the deed has been done, tell people at my funeral about my medical history and how I have suffered physically for my entire life and that in the latter stages I faced surgery and adhesions. Tell those people how much was taken from me.
Please tell those who said you have to stop me and who questioned how you could allow this, to ask themselves who it would have been better for?
I can’t imagine being a parent having to go through this, but one thing I do know and believe is that when you have a child, you give up certain things, one of which is doing things for selfish reasons or for being able to manipulate that child once you have raised him in the best way possible, to accept him for who he is and to support him in rational decisions.
Tell people that even if you said to me that you were not going to allow this, I would have gone without your blessing. Then you would have felt regret. Some people are saying that you will regret this.
I would like them to think deeply about the regret you will feel if I went with someone else to Dignitas and not my parents. The regret you would feel if you were not there as I breathed my last breath. They must think how I have suffered and be at peace that I, for the first time, am at peace, something I have searched for my entire life.
Sometimes, Dad, I am not with you when you talk to people. When they ask how you feel about this matter, you probably raise your problems with me not being terminal. All I ask of you is that in these discussions you mention that I do in fact have an incurable disease, that I am badly affected but by it as well as all that goes with it.
Dad, you have said on different occasions that in your opinion Mom and I overstate how I am affected; this is the opposite of my opinion and I feel you understate it to people.
Dad, I know this is extremely difficult for you because naturally you are a fighter. I thank you so much for your support. I want to thank you so, it is beyond words. It is more a tidal wave of love and gratitude pouring from my heart for supporting me in your own way this far and for what is to come. Just always remember my dream of finally being at peace in all senses of the word – it is or can be, could be a comfort to you eventually.
I love you both for the parents you are and have been. All of our hearts are breaking and I just want to sleep, be at peaceful sleep.
Just remember support is given in different ways and both of you are individuals and give support in different ways. The support you give is equally vital to me and I want to thank you for that.
9
My Son
Neville had written to Craig shortly after he had informed his parents of his intention to end his life. Patsy responded a while later to Craig’s long letter to them both. Neville and Patsy’s letters are reproduced here.
17 May 2009
My dearest Craig
Thank you for spending time with me “watching the waves” today and for allowing me to talk to you about your decision to follow the assisted suicide route.
As difficult as it must be to terminate one’s life, I know that in the past you have fought NF with enormous conviction and courage.
At times I think it is all a bad dream but I do know that you don’t want to continue with the life you have been leading.
Craig, I feel that I haven’t given you all the recognition you have deserved, particularly taking into account the handicaps you have lived with. So I would like you to know that some of the reasons for admiring you are:
Your integrity. I am able to say with total conviction that I have never come across anyone who is more honest than you are. In my view, the ultimate compliment!
Your colour blindness, how you don’t discriminate. What a better place the world would be if it could follow your example.
Your delightful sense of humour. This is a quality that not everyone is aware of to the full extent.
Your impeccable manners. I well remember the positive comments from others including the day you played golf with strange ladies who managed to get our telephone number and phoned to say that you were not only a good golfer but also a young man with impeccable manners.
Your determination. There are so many examples. Your successful studies, including matric, marketing and personal training. I remember looking at your Economics paper and thereafter being amazed how well you passed.
Your success at golf. Not only did you overcome a coordination problem and the after effects of brain surgery but you played from a single handicap and played provincial golf at school level for two consecutive years. Most of us, including Rodney, Aaron and Nelius, dream about your swing.
Craig, these are but some of the many features which make me proud of you in such a special way.
I love you!
Dad
21 May 2009
My darling “Craigie�
��
This letter is so difficult to write but I will try to express some of my feelings for you. I cannot believe that it has come to Dignitas, although I fully understand why.
I go back to when you were a wee baby. How you used to sleep with your arms beside your head – how I woke up three minutes before you in the night when I knew that you were going to start crying.
Even then, the mother’s instinct was kicking in. How you used to walk with your dummy and bottle in your hand; how you used to wake up early in the morning, come into our room and ask Dad for a “cherry, Papa”. He would take you down to the fridge to give you one. How you fell down the stairs in Dentree Road and I watched you falling but couldn’t stop it.
My heart nearly stopped! Such beautiful memories of us going down to the beach and you tasting your first ice cream. Your beautiful smile. How we went to the Linton Grange Library together to take out kiddies’ books for you and how we used to play with educational toys on the carpet in the family room. How you started at a playschool and cried and cried when I had to leave. We always had such a strong connection.
The pre-primary with Alec and how wonderful you were to him. How you understood him although nobody else could. Your birthday parties – you loved them and unwrapping all the toys.
When going to other birthday parties, you would always first cling to my leg and “suss” everyone out before you left the safety of my leg. How proud I always was of you at plays and prize-givings. You were such a good child and never gave us one ounce of trouble.
I am so sorry that you had to suffer through your school years. They are never great years but you really had to fight your way through every year – not only academically but socially and emotionally as well.
I so wished that there was another school in PE that we could have sent you to. Nothing ever came easily to you and you fought with great determination to obtain all you have.
You were never given a break. The only break you ever had was to be born with family that could comfortably financially support you. Then your after-school years and how you had to fight again. Why is so much given to one child and others have nothing? We will never know but I do know that life is very unfair – particularly in your case.
As I think back over the years and ponder on them, I realise how much you have taught me in my life. Some lessons are: unselfish love, fighting to survive, great determination in spite of the greatest obstacles, empathy to all irrespective of colour, bravery, thankfulness, appreciation of happiness, honesty and wonderful values in life.
You were never the teenager who swore or shouted at his mother or used drink and drugs. You just always had a sense of what is wrong and what is right in life and I also believe that this is why you have such peace about Dignitas. Craig, you are one of God’s very special angels on earth but as the song goes, “This world was not made for someone as beautiful as you.”
Even when you had your brain op, I read a poem about God lending us, for a time, a child of His to look after and love but then also not to grieve too much if he is taken away sooner than we would like. The poem actually mentions the ages of 27 or 28. That poem always meant something special to me – perhaps because of Neurofibromatosis.
You have fought with such dignity against NF and adhesions. I don’t know how you did it but I was always happy that you survived and I could have you longer. But, as you say, even the strongest grow weak and NO ONE can blame you for the decision you have taken.
Just know that I have suffered with you through all these hateful ops and hateful kids at school and the church cell group. You have every right to say “so far but no more” and only you can say it. We have already lost quite a large part of you. It saddens me so much that illness can do this to a person, but I suppose that we all have to face our own trial in life. Yours has just been so continuous since the day you were born.
I love you with such an all-consuming love that I don’t even try to think about after Dignitas. My heart explodes with love for you and I would happily have carried your load on my shoulders if I could.
I am sorry if I overprotected you but I was so in love with you that I did not even know it. Perhaps, if I did not overprotect you, you would have had a wife by now. Who knows?
Your kindness to others, your high standard of manners and the way in which you related to older people are all qualities of yours that stand out when I think of you.
I can understand why you desire peace now, Craig. My mother went through two horrific years before she died of cancer and I remember seeing her after she had just passed away and she looked so peaceful, no more suffering. I so wish I could give you that peace without Dignitas, but I can’t.
You need never fear that anybody in this world will replace you. Nobody could ever fill your shoes and you will be in my heart forever and ever. As a matter of fact, if Dignitas does happen, I know your soul will be with me every day, all day, until I join you.
So, my darling, I want you to know that I will be there and you will lie in my arms. I could not think of it any other way. You are my hero in life and I could never love anyone again the way that I have loved you. Thank you for teaching me that love.
Your old mother
10
Loose Ends
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.
“Any of several large, web-footed sea birds of the family Diomedeidae that has the ability to remain aloft for long periods.”
“A seemingly inescapable moral or emotional burden, as of guilt or responsibility.”
“Something burdensome that impedes action or progress.”
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 comfo
rting 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.
With love
B
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
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