Ahmad was wearing the wrong genes

 A version of this article was published by the DAWN today




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 again on the hospital ward that Friday, Ahmad was destined to die a slow and painful death you see. He had, in fact been dying for some time and this was not news to anyone. Over the last three years, he must have been aware for that his condition was deteriorating. He often struggled 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, he must have thought “this is it..I am going to die now”. Despite this, despite the battering his body was taking, he was strong, and would somehow make it to another day. He would visit the ward often and the nurses as well as the Doctors knew him well. His family cared for him and would visit regularly.

It is said, one of the greatest hurts a parent can suffer is to outlive their child and so it was in Ahmads case; his parents were alive and generally healthy. They would spend as much time as they could with him as was possible, because like everyone else, they knew he would not be with them much longer. 

His attendances in 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, staff watched as the female senior Consultant had to have that “conversation” with his parents and close loved ones. 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 resuscitation (CPR)?

Still it needed to be said, CPR was not like the movies or television, barely 18% survived to the point of discharge in hospital. When death was a certainty, by performing CPR, the nurses and doctors did manage to revive Ahmad, was it not just prolonging his suffering even more? 

The Consultant was an expert; she had carefully discussed it with them 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’. Few of us can imagine how painful that conversation must have been for his parents. 

Still Ahmad was fighting on, he didn’t fully understand what was going 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 agreed by the senior Paediatrician that he could be discharged back home. Then 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 him brain. The senior Paediatrician shouted for his mother, she rushed nearby..hesitated..and slumped in the nearby chair refusing to look at her son. The Doctor stopped the nurse for a second and picked up Ahmad, she carried him dragging his oxygen mask over to his Mother and said, ‘Mum your son is about to die, let his last sight and last touch in this world be yours’ and so Ahmads Mother held on to her three year old son for the last time. A moment later he died..and 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% of these conditions. If you would like more information on genetic conditions visit http://www.geneticalliance.org.uk/

Murder they wrote

A lot has been said and written about the callous and brutal murders of Syed Saleem Shahzad and Professor Saba Dashtiyari. Essential reading online on the formers case is FiveRupees blog (more so for the obvious troll defenders of his murder) and in the latters case it is Malik Akbars  article and profile of a lost Balochistan intellectual. These deaths have also reminded people of the tragic murder of Hayatullah Khan. In his unfortunate case, they did not just kill him but they also killed his wife.

 Two other bits of info particularly touched me about recent events. The first by Christine Fair, who was no supporter of Shahzad but, had this to say, "Each time I met him, I was dubious about his ostensible links to "all sides," but his death chills & disturbs immensely"
 The other was this touching video about Dashtiyari,by cartoonist J Haque, in his slightly rude and always direct approach.

My own take on all this? I have little to add: I wanted to title this post "Akhir Kyun?" (loosely translated as "In the end why?" ), and go into a lament about how things seem to lurch from tragedy to farce with the most breathless ease in Pakistan. I think I will just end it with this poem:

by Maurice Ogden
1.
Into our town the Hangman came,
Smelling of gold and blood and flame.
And he paced our bricks with a diffident air,
And built his frame in the courthouse square.

The scaffold stood by the courthouse side,
Only as wide as the door was wide;
A frame as tall, or little more,
Than the capping sill of the courthouse door.

And we wondered, whenever we had the time,
Who the criminal, what the crime
That the Hangman judged with the yellow twist
of knotted hemp in his busy fist.

And innocent though we were, with dread,
We passed those eyes of buckshot lead --
Till one cried: "Hangman, who is he
For whom you raised the gallows-tree?"

Then a twinkle grew in the buckshot eye,
And he gave us a riddle instead of reply:
"He who serves me best," said he,
"Shall earn the rope of the gallows-tree."

And he stepped down, and laid his hand
On a man who came from another land.
And we breathed again, for another's grief
At the Hangman's hand was our relief

And the gallows-frame on the courthouse lawn
By tomorrow's sun would be struck and gone.
So we gave him way, and no one spoke,
Out of respect for his Hangman's cloak.

2.
The next day's sun looked mildly down
On roof and street in our quiet town,
And stark and black in the morning air
Was the gallows-tree in the courthouse square.

And the Hangman stood at his usual stand
With the yellow hemp in his busy hand;
With his buckshot eye and his jaw like a pike
And his air so knowing and business-like.

And we cried, "Hangman, have you not done
Yesterday, with the foreign one?"
Then we fell silent, and stood amazed,
"Oh, not for him was the gallows raised."

He laughed a laugh as he looked at us:
"Did you think I'd gone to all this fuss
To hang one man? That's a thing I do
To stretch a rope when the rope is new."

Then one cried "Murder!" and one cried "Shame!"
And into our midst the Hangman came
To that man's place. "Do you hold," said he,
"with him that was meant for the gallows-tree?"

And he laid his hand on that one's arm.
And we shrank back in quick alarm!
And we gave him way, and no one spoke
Out of fear of his Hangman's cloak.

That night we saw with dread surprise
The Hangman's scaffold had grown in size.
Fed by the blood beneath the chute,
The gallows-tree had taken root;

Now as wide, or a little more,
Than the steps that led to the courthouse door,
As tall as the writing, or nearly as tall,
Halfway up on the courthouse wall.

3.
The third he took -- we had all heard tell --
Was a usurer, and an infidel.
"What," said the Hangman "have you to do
With the gallows-bound, and he a Jew?"

And we cried out, "Is this one he
Who has served you well and faithfully?"
The Hangman smiled: "It's a clever scheme
to try the strength of the gallows-beam."

The fourth man's dark, accusing song
Had scratched our comfort hard and long;
"And what concern," he gave us back.
"Have you for the doomed -- the doomed and Black?"

The fifth. The sixth. And we cried again,
"Hangman, Hangman, is this the man?"
"It's a trick," he said. "that we hangmen know
For easing the trap when the trap springs slow."

And so we ceased, and asked no more,
As the Hangman tallied his bloody score.
And sun by sun, and night by night,
The gallows grew to monstrous height.

The wings of the scaffold opened wide
Till they covered the square from side to side;
And the monster cross-beam, looking down,
Cast its shadow across the town.

4.
Then through the town the Hangman came,
Through the empty streets, and called my name --
And I looked at the gallows soaring tall,
And thought, "There is no one left at all

For hanging, and so he calls to me
To help pull down the gallows-tree."
So I went out with right good hope
To the Hangman's tree and the Hangman's rope.

He smiled at me as I came down
To the courthouse square through the silent town.
And supple and stretched in his busy hand
Was the yellow twist of the hempen strand.

And he whistled his tune as he tried the trap,
And it sprang down with a ready snap --
And then with a smile of awful command
He laid his hand upon my hand.

"You tricked me. Hangman!," I shouted then,
"That your scaffold was built for other men...
And I no henchman of yours," I cried,
"You lied to me, Hangman. Foully lied!"

Then a twinkle grew in the buckshot eye,
"Lied to you? Tricked you?" he said. "Not I.
For I answered straight and I told you true --
The scaffold was raised for none but you.

For who has served me more faithfully
Then you with your coward's hope?" said he,
"And where are the others who might have stood
Side by your side in the common good?"

"Dead," I whispered. And amiably
"Murdered," the Hangman corrected me:
"First the foreigner, then the Jew...
I did no more than you let me do."

Beneath the beam that blocked the sky
None had stood so alone as I.
The Hangman noosed me, and no voice there
Cried "Stop!" for me in the empty square.