The doctor turns to me and says you need to think about what you are going to do if he needs to go on a respirator. I do not understand. I ask. He says if he turns for the worse and needs to go on a respirator what will you do? I say why are you asking me – you are the doctor? He says no, if that happens, the family must decide. And one of you must make a final decision.

I am that one of me.

He never uses the words life support. He never says if he cannot breathe on his own, do you want us to provide a way for him to breathe or do you want to let him go? He never tells us we will not be able to communicate with each other anymore if he goes on a respirator because we have to sedate him so that he does not try to remove it. He never explains what a respirator means. He never says: do you know that he will never recover from this no matter what? He never says his heart is so broken we cannot possibly fix it and, considering you have no medical aid you cannot afford what may save him. And even if you can afford it, he is a smoker so we are unlikely to be able to give it to him. None of this is said. Not even he is too old anyway in comparison to some people who need new hearts and he will never ever have the same or even a similar kind of life he had before anyway, because as you can see his body no longer works and we have no idea at this time about his mind.

He never says that last part especially.

So, before the time comes, I make a decision on life support for a person I love without understanding what I am doing or what it means. I do not remember when I last slept or how many meetings I have had with how many doctors. Except for the one cardio surgeon who refuses to give us tests he has done, so we can give them to another cardio surgeon who needs them, because, he says to our bewildered selves, “that man has never given me any business”.

Most of the time I am either outside the ward, making or taking phone calls, finding ways to pay today’s R15 000 minimum so that he can stay in the hospital. My own mind is certainly not working properly. I must also buy food for the house and fetch my child from school and I have not been able to work for weeks because I am at the hospital and the bills that are not the hospital bills are making a little mountain on my dining room table at home.

I speak to his closest siblings. They are sort of traditionally religious. They say we must do everything we can to save him because God says so. I do not ask — because I do not know that I should — whether this God intends for us to be kept alive when we are supposed to have left. I do not understand, that even by this time he is beyond saving.

In fact I think he will be fine. This is a phase. He is not the kind of person to die. Really. Anyone who knows him will confirm that. Death does not cross my mind except for once in the parking lot and I put the thought aside as if I cannot think of such things.

Medicine is amazing. There is this too. There is this feeling that medicine can indeed save us.

I never say no. I never take him home and make a bed for him here in his most favourite garden.

Inevitably, he goes on life support for almost a month and it is of no use whatsoever because he dies. He was going to die anyway, like all of us. All that happens is that he goes on a respirator and lasts for another month in some strange world in which there is no glass of water and who knows what suffering.

One day, because his body works the way it should, they take him off the machine and we are celebrating because he can breathe all by his own self and then he dies, although, as he does, they do everything they can to save him again without asking anyone. They just respond, with electric shocks while he dies and I am shouting leave him alone, leave him alone because at this particular moment I feel his heart, what was left of that loved heart, beating far too fast inside me.

The doctor’s bills come to R350 000 and the head of the cardio unit has a black Merc with a personalised number plate as if to say this respiration business is glamorous and there we are, with nothing. Not even a memory of a good way to go.

The doctors need to spell it out. They need to sit you down and tell you to sleep and come back in the morning and explain everything to you properly so that when you decide to switch someone on you have an idea of what it is you may be doing to them. They should also explain how they might benefit themselves from your decision. Which makes me think about why they leave out what exactly they leave out when they ask you to make big decisions about life and death.

Like for instance they never said die.


  • Lesley Perkes writes about the state of imagination, her general loss of respect for politics and big business with too few exceptions, eyesores, aesthetically pleasing moments of bliss. Every now and then she writes too about grave matters some people think are best kept to yourself. She does not. Err. Obviously. Sometimes she writes about the silencing and the wars. MsChief at artatwork, a public arts action dis-organisation based in Johannesburg, Lesley is also #lesfolies at The Troyeville Bedtime Story, a timeless legend and neighbourgood adventure, in happy collaboration with Johannes Dreyer, photographer and artist. Writer, curator, producer and general artist with performative tendencies, in February this year Lesley spoke at TED2013 in Los Angeles. It was a life experience of note. She uses her time to fund, or find funding and resources to produce artwork and advocate for make-believe.


Lesley Perkes

Lesley Perkes writes about the state of imagination, her general loss of respect for politics and big business with too few exceptions, eyesores, aesthetically pleasing moments of bliss. Every now and...

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