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Chief Rabbi Dr Jonathan Sacks Yitzhak Perlman, one of the world's greatest violinists, contracted polio at the age of 4. Ever since, he's had to wear metal braces on his legs and walk with crutches. Once when he was giving a concert, a string on his violin broke. Instead of calling for a new violin he continued to play on three strings. When the concerto was over, the audience gave him an ovation and called on him to speak. He did. He said one sentence that everyone there knew referred not only to the broken string but to his disability and much else that is broken in this world. He said: "It's our task to make music with what remains."
Excerpt from BBC Radio 4 thought for the Day, 15 December 2006
I watched him arrive at the hospital ward that Friday, Ahmad was destined to die a slow and painful death. He had, in fact been dying for some time and this was not news to anyone. Over the last three years, his condition had drastically deteriorated; often struggling to breathe despite the oxygen that the doctors had arranged for him, his muscles were wasting away bit by bit because of his condition. Each time he picked up one more infection, I wonder if he thought to himself “this is it … I am going to die now”.Despite the battering his body was taking, he was a strong boy and would somehow make it to another day. His frequent visits to the hospital allowed the nurses and doctors to get well acquainted with him.
It is said, one of the greatest pain a parent can suffers is that of outliving their children and so it was in Ahmad’s case; his parents were alive and generally healthy. They would spend as much time as they possibly could with him, because like everyone else, they knew he would not be with them much longer.
His attendances in the hospital were becoming more and more frequent and each attendance had more to do with caring for the dying then for treating the sick. A few weeks earlier, the staff watched the female senior consultant have the “conversation” with his parents. I am sure she struggled with it, as much as anyone would. How do you tell parents, that their son is going to die soon and it would be cruel to try and revive him by Cardiopulmonary Rresuscitation (CPR)?
Still it needed to be done; CPR was not like in the movies or television, barely 18 per cent survived to the point of discharge from the hospital. When death was a certainty, and if the doctors did manage to revive Ahmad by CPR, would it not be just prolonging his suffering even more?
The consultant was an expert; she had carefully discussed it with Ahmad’s family over many weeks. Her team would do their best to treat any illnesses and make sure Ahmad was comfortable to the end; but he was not to be resuscitated if his heart stopped beating.
Initially his father understood, but his mother struggled with the discussion, over the weeks she finally came around and would say ‘it was for the best’. Only a few of us can imagine how painful that realization must have been for her.
Ahmad didn’t fully understand what was going on you see, he was only three years old. He was born with an inherited genetic disorder, a rare condition, but that was more common in his family, because of several generations of cousin marriages. His condition meant his muscles were wasting away at an accelerated rate, to the extent that he could no longer breathe without support.
Tranquil, despite everything Ahmad was a fighter that Friday, he fought off his latest infection. By Saturday it was decided by the senior paediatrician that he could be discharged and sent back home. When suddenly that afternoon, his breathing increased rapidly as he struggled to clear his lungs, the nurse desperately tried to suction the secretions before the oxygen was slowly cut from his brain.
The senior paediatrician shouted for his mother, she rushed from where she was standing nearby .. hesitated .. and then slumped in the chair next to Ahmad’s bed, refusing to look at her son. The doctor picked up Ahmad, and carried him to her; his oxygen mask dragging behind. ‘Mum your son is about to die, let his last sight and last touch in this world be yours,’ the doctor said handing him over to his mother.
Ahmad’s mother held on to her three year old son for the last time. Soon after he was declared dead. His mother wept: to call it crying is perhaps understating it, it was in fact something more primal, not a cry, something closer to a howl. Despite all the forewarning and discussions, nothing prepared her for the inevitable.
This story is based on true events. British Pakistanis are 13 times more likely to have children with genetic disorders than the general population. Modern day genetic testing could only screen for 40 per cent of these conditions. If you would like more information on genetic conditions visit http://www.geneticalliance.org.uk/
Zalan is a free lance writer based in the UK with an interest in history and politics. He blogs at A tale by a takhalus.
The views expressed by this blogger and in the following reader comments do not necessarily reflect the views and policies of the Dawn Media Group.
