The Last Right

by Marianne Thamm

  And then he said because his mother couldn’t be with him when he had that op in London and his dad took her place, he so badly wanted to die in a dignified manner in Switzerland, lying in her arms with his father’s arms around the two of them.

  Can you imagine as a granny, now hearing this?

  But I am thankful they brought me into all of this and that I could have shared it with them.

  And I said to him, “Craig, my darling, are you really sure?” I said, “You know your father is strong but you know your mother has suffered a lot and I worry that your mother will give in completely.”

  And he said to me, “Nana, I know as far as the Church goes, people will condemn me. I don’t think you will. My mom has been through so much already, she will find a way.”

  So, I said, “Craig, you know how much I love and respect you, and you are a grown-up man now. You are not that little boy any more and I shall respect whatever you do, I shall never criticise it.”

  And I have remained true to my word.

  So, I said to him, “Craig, you go with my blessing for what it is worth.”

  He didn’t tell me when he would take his own life. We didn’t know what night it would be, but he told me it was going to be “soon”. This was in August.

  Now we know that what he did was he saved all those tablets. He took all of them. And then he didn’t die.

  I was in such a state. I don’t want to remember it all.

  We all went to the house. It was terrible. My daughter Lynette came for a day and she left. She couldn’t handle it. I don’t blame her. Craig was very fond of her. After that first attempt he was so weak and he looked so bloated. And I would lie with him on the bed.

  When Craig was small he used to call Lynette Ahlynette and it stuck and he told me to tell Ahlynette to come in now. She wrote him a beautiful poem.

  It took a long time for him to get out of that bed. After a week he gradually picked up and was up and about in the house.

  I remember lying next to him on the bed and he said to me, “Nana, you people mustn’t think I am not going to do it any more. Don’t think that this has made up my mind not to do it. I am. Dignitas has made it worse.”

  I was surprised at how calm he was. That child was so calm. I don’t know. Maybe he was churned up inside.

  Now I remember my birthday is on the 4th of September and I remember him saying to us, it is coming, it is going to be. I was staying with them at that time. Now every night he says goodnight to us and we do not know if it is going to be.

  The next morning we hear Neville open the door, as he usually did, and he talks to Craig and I think: “Thank God.”

  Imagine how he felt inside? How anxious he must have been about getting on with it. This big thing he must do.

  I remember one morning I met him in the passage and I said something to him out of love but that I think now might have been uncalled for. I should have been more tactful. I said to him, “How are you this morning, my boy?” and I hugged him.

  And he hugged me back and he said, “Nana, you should imagine how I feel.”

  And so things went on like that in the house. And he still said the last night or the night before, he told a joke about the drink the Moscow Mule he wanted us to drink after the funeral.

  He still poured a drink for us. And then he said goodnight… but that wasn’t the last night. I remember Patsy saying to him, “Craig, you mustn’t let this happen on Nana’s birthday.”

  On the night of the 31st I was there. He died in the early hours of the morning of the 1st. That night, he didn’t even pour a drink for us. I don’t even think he said goodnight. He just disappeared.

  But we didn’t know if that was the night or not. I was sitting with Patsy in the lounge watching TV and Neville was working on the computer.

  Then we all went to bed. And then the next morning Neville knocked on the door, I think, then he opened it and then it was over. Craig was gone.

  Neville didn’t want us to go in, to see him.

  Oh man, it was just so, so sad. Night after night you expect it to happen and there is nothing you can do. This is a grown man and not a child and it is his desire. And then it happens.

  And then Neville called the police and very soon the house was bustling. Patsy was just sitting there. I think she couldn’t quite believe it.

  Then on the 4th of September, my birthday, was Craig’s cremation. Did you see the picture that Sandy took at the cremation, of the smoke going up?

  I find it beautiful. Maybe I am strange but that kind of thing gives me peace. That smoke, for me, it was his peace.

  You know sometimes I like to watch the video of his funeral. There were over 300 people there and it was wonderful. For some reason it gives me peace.

  16

  Sarah: My Second Son

  Nontsebenzo Mjebeza, or Sarah, began working for the Schonegevel family in 1984 when Craig was three years old. While she has since retired, she still visits the family frequently.

  Over the years Sarah formed an invaluable part of the delicate support system in the Schonegevel home, looking after Patsy in the early years and becoming at times a “second mother” to Craig.

  She had gone home on leave to Govozane just outside King William’s Town in August 2009, just before Craig took his life. She was unable to return in time for the cremation or memorial service.

  Losing her own son, Nuzuzo, at the age of 31 to TB in 2003 prepared her somewhat for dealing with Craig’s decision to take his own life.

  I FOUND THE JOB AT THE SCHONEGEVELS after working for another family. They were still living in Weybridge Park then. I remember that the first time I babysat Craig he didn’t cry and his mom told me that that was wonderful.

  I have two children of my own. One of them, my son, Nzuzo, died in 2003 at the age of 31. My daughter, Nenekazi, is 33 now and I don’t have any grandchildren.

  Craig was always such a lovely little boy. When he was small I used to help his mom with the transport and I would take him to the nearby shopping centre to catch his bus to school. In the afternoon I would wait for him there as well.

  In many ways Craig understood me more than my own children. He could tell when I was cross or irritated, then he would say, “Sorry, Sarah” or he would make me a cup of coffee because he knows I love coffee.

  I was here when he came back from those big operations in London and I was here when his mother was so sick as well. You can see the photo of him when he came back from that operation, this big scar all around his body.

  What I admired about Craig is that he was a Christian. A very good man who did not like lies and who always wanted to give to others.

  There were times when it was not so sad as it was at the end. I remember him when he passed his matric. When he had his 21st birthday party. I remember his partner and how he was dressed.

  He was all right at that time. He was happy. But later he was in and out of the hospitals. I saw him being very sick and suffering.

  When my own son was in hospital with TB I used to go and visit him and he was in a lot of pain. And I would go to the bathroom and I would pray to God to help him, my son. Then he died the next day and I went to see him and he looked very peaceful and I said thanks to God for doing that.

  With Craig I saw his suffering and he told me at the end he was tired of going in and out of hospital. He told me he did not want to live and I said, “Craig, what do you mean?”

  And he told me he would take his life. He told me. He didn’t want to talk to anyone in the beginning. He didn’t want to tell his granny.

  But I said to myself I understand, it is because it is too much pain. We can’t feel the pain but he can. In the last days he was getting thinner and thinner, eating only soup, and he was always buying chocolate for me. He said, “Here is chocolate because one day I will not be here.”

  I was on holiday when he did it. They phoned me and told me Craig had died. It was too difficult for me to come up for the funeral.
/>   I did not get a chance to say goodbye but I see him here, every day in the photographs. I miss him very much. He used to talk to me and tease me every day.

  I can see his mother is very, very sad and she misses him. His father too. We are all suffering but I do believe he is watching us.

  They showed me the little box of ashes before they scattered him. I believe he is at peace now.

  I believe it, I accept it. It is from God. What can I do?

  17

  Surviving Craig

  “It is a platitude that we live our whole lives in the shadow of death; it is also true that we die in the shadow of our whole lives.”

  – Ronald Dworkin

  Three years after Craig’s death, Patsy and Neville are still coming to terms with his life and how it ended.

  Patsy carries in her purse a photograph of Craig as an adult that was taken during one of his many hospitalisations towards the end of his life. In the photograph Craig appears to be asleep with a feeding tube inserted into one of his nostrils. His expression betrays his pain and discomfort. Whenever his loss becomes too great or overwhelming, Patsy says she looks at the photograph to remind herself of her son’s suffering and the release that death brought.

  Neville’s favourite photograph is one taken when Craig was about four or five, before his major surgeries in London. It shows a fresh-faced, happy toddler with a carefree expression unmarked by pain or disappointment. It is a portrait, says Neville, that reminds him of the period in his son’s life when he was unburdened by NF and the subsequent pain and numerous challenges he would face.

  Patsy

  I lost my mom in 1974 and my dad in 1996. I was close to both and grieved for them. I was extremely sad and missed them terribly but nothing could prepare me for dealing with the loss of Craig on 1 September 2009.

  Although we had known that he wanted to end his life and we had received most useful grief therapy during that time, coping with Craig’s actual death was a shattering experience. It is something only a parent who has lost a child can understand.

  I live daily with the pain and loss. Sometimes it feels as if a part of me has been amputated but I can still feel an ache in the missing limb. I have tried to find ways of coping; joining a group of mothers who have lost their children and consoling myself with the notion that this is what Craig wanted and that he is at peace.

  But it has not been easy and I have often turned to this poem to find comfort and solace.

  When I am gone, release me, let me go,

  I have so many things to see and do

  You mustn’t tie yourself down with tears,

  Be thankful for our beautiful years.

  I gave you my love, you can only guess

  How much you gave to me in happiness.

  I thank you for the love you each have shown

  But now it is time I travelled alone.

  So grieve for a while for me, if grieve you must,

  Then let your grief be comforted in trust.

  It is only for a time that we must part,

  So, cherish the memories

  locked within your heart.

  I won’t be far away for life does go on,

  So if you need me, call and I will come.

  Though you can’t see or touch, I’ll be near

  And if you listen with your heart, you’ll hear

  All my love around soft and clear

  And then when you

  Must come this way alone

  I’ll be waiting to greet you with a smile

  and say “Welcome Home”.

  (Source: Unknown)

  Our loss has taught me a number of lessons that I would like (for those who might need it) to share. I hope that in some way my experiences and what I have learned might help others who might be depressed, despairing, grieving or dealing with loss.

  If you are a parent, be thankful for the gift of a child, even more so if your child is healthy. I also believe that you can never love a child too much and that you should never be afraid to allow your child to experience the love that comes from within your deepest being.

  I have learned to appreciate each new day as there will come a time when we must all take a detour along a painful path that will take us, remove us from everyday life and into the valley of desolation.

  The choices we make in our lives are what ultimately define us. For me it has been important to understand that with each choice there are consequences.

  When it comes to illness and disease, I have learned that the best way to empower yourself is to find out everything you can about it. This way you will be prepared and know what the future may or may not hold.

  Craig was a unique individual and I learned that some of his “differences” resulted in him being singled out and “othered”. This was one of the most painful aspects of Craig’s life. He was constantly judged, not for who he was, but for how he appeared to others. Life would be so much easier for those who are different if people could learn to be accepting and respectful of everyone. We can never know the inner world of another individual.

  Bullies haunted Craig throughout his life. Bullying destroys a child’s self-esteem and we have learned it is vitally important to deal with it immediately where and when it occurs.

  Dealing with Craig’s various health complications over the years taught me to not simply accept the opinion of “professionals” like medical specialists, general practitioners or hospital and nursing staff and to question if needs be.

  We are all fallible and, when in doubt, do not be afraid to ask questions, trust your own instinct and speak out.

  One of the most difficult things to accept as a parent is that when a child grows up and becomes an adult, he or she has the right to make their own choices, even if these break your heart.

  All you can do is respect and offer support and not try to control your child no matter how tempting it might be to do so.

  I have also learned that life is essentially unfair. We need only look around us to see evidence of this – poverty, hunger and war. Sometimes it is of no use to ask why or to expect answers.

  We need to accept the hand we have been dealt in life and handle it to the best of our ability. This does not mean we must be passive spectators but we need to know that sometimes life does not provide us with the outcome we had wished for.

  The raw and searing pain I felt after Craig’s death was made bearable only through the love and support offered by family and friends. I am deeply grateful to all those who tried at various times to lighten the load for us over the years, whether through prayer or practical interventions like bringing food or moving in with us.

  The network of support for those who are dealing with either their own illness or that of a loved one is one of the truest, most comforting and sustaining acts of love and friendship.

  I am grateful to my faith and my belief in God. I felt that this held and carried me, particularly during the last six months of Craig’s life when I felt God’s presence constantly. There were times when we were all just so exhausted when He picked me up each day and enabled me to look after Craig.

  After Craig’s death I needed to deal with the grief. None of us has any real idea of how this will manifest and each of us deals with it differently.

  Grief follows like a shadow. It is with you wherever you go and can overcome you unexpectedly. A song, the appearance of a dog or a glimpse of someone who might look like your departed loved one can trigger it. I believe you do not have to ever apologise for your grief and that you need to let it manifest itself.

  Bearing grief on your own can be an isolating experience and I have learned that it is important to deal with grief, either through professional counselling or by joining a group of fellow grievers.

  While there are several studies that suggest there are stages to grief, I believe you should allow yourself as much time as YOU need. Your body will let you know. Grief is a process with often two steps forward and three steps back. I have no idea
how long I will grieve for Craig.

  Three and a half years later and I still cannot believe he is not here and that I will never see, hold or talk to him again. But I need to carry on. I force myself to get up three mornings a week to go to gym. But if I feel like staying in bed later on the other two mornings, I do so. Sleep too has been a great healing force for me.

  The death of a child often results in a secondary trauma to parents and statistics for shattered marriages after the death of a child are high. Neville and I, while we grieve differently, have been very aware of this and have sought help while grieving.

  I have learned that women and men often grieve differently and that one should accept and understand what your partner needs.

  There are people who feel they need to experience the depths of their pain but I have found that sometimes it is too onerous a burden and that medication can help you to experience your pain and not be completely debilitated by it.

  One way I deal with the loss is to revisit places that Craig and I loved or to perform daily rituals in remembrance of him. For instance, I often walk along the Pier in Port Elizabeth where we scattered Craig’s ashes and I toss a rose into the sea in memory of him.

  I also talk to him often during the day or kiss his photo. Every night, I light a candle in Craig’s honour and memory. I view him now as my guardian angel who is always present, perhaps sitting on my shoulder, looking out for me.

  Craig’s life and death have prompted us to think about our own mortality. While it is often difficult to do so, don’t put off thinking about it. Draw up a Living Will or join Dignity SA, if you believe in the cause.

  This book was one of Craig’s wishes and the process of it has helped us to further find closure and meaning in his death.

  Neville

  My earliest recollections of loss followed by sadness or grief go back to when I was approximately five and growing up on the farm. There are two specific incidents that I recall: my horse injuring himself badly by ripping open part of his rib cage, and then a fowl which I had bought with savings was stung by a bee in one eye. Both animals were mine and both survived.