Janus 11
“Acute lymphoblastic leukaemia (ALL) is a type of cancer that affects the blood and bone marrow. ALL is characterised by an overproduction of immature white blood cells. These cells crowd the bone marrow, preventing it from making normal blood cells… Inadequate numbers of red cells and platelets being made by the marrow cause anaemia, and easy bleeding and/or bruising.” The Leukaemia Foundation.
The bruising is not what I remember, what’s stayed with me is the paper-smooth of Jessica’s skin stretched taut on the forehead and cheekbones, and on her head she wore a blue headscarf tied at the back to hide the baldness. I remember thinking how the absence of hair highlighted the perfect formation of her head. Most hauntingly I see her arms, thin as praying mantis, weaving over the keyboard, their paleness sharp against the cream of the ivory. I remember her eyeballs staring from sockets that seemed to get larger by the day.
In the days following the terrible verdict Jessica’s playing seemed to gather energy and became almost frantic, like she was trying to make the most of the time she had left. However, as her health deteriorated, her playing became more sedate. Arriving home after work one evening I found Jess at the piano playing Schumann’s Traumarei with such wistful intensity that I seized up with emotion, fighting back tears. When she was done she looked up waiting for my response.
‘That’s so beautiful darling. It’s my favourite.’
"I know Dad, that’s why I played it when I heard the car come up the drive.’
In the final act of her decline, as strength abandoned our child, the sound of the piano was heard less and less in the house, before silence descended. And that was the worst, the silence. Anyone who has had the misfortune to invigilate over an ailing family member, knows the wretched feeling of hopelessness that hangs in the air of a household, like a sodden, smelly rag.
The strangest impulses take hold of you. Like the urge to scream but having to suppress it. Like wanting to grab her and shake off the demon spirit that’s taken possession of your child. And all the time you are aware of a nauseous lump at the base of your neck, that no convulsions over the toilet bowl will dislodge.
Each new day you coax her to take food, drink and medicine, only to see her sink back into pain. In the final act of her decline, as strength was abandoning her, we wheeled the bed in the living room to bring her closer to household activities, such as they were. Jessica, not yet thirteen years and declining fast, cast furtive glances in the direction of the piano she had loved with passion, knowing that she would never play again.
‘That longing in her eyes,’ whispered Elly, ‘it’s heart-wrenching. I just can’t look at her.’
Thinking of the intense pain that even the morphine could not relieve, I suggested
‘Let's get some piano music. It might take her mind off …other things.’
‘What things?’ Asked Elly, without looking at me. I bit my lip.
We took out collections of French piano pieces by Debussy, Saint Sains, Satie, Ravel. Music that we knew she loved. But the minute the notes were released on the heavy air of the house Jessica was startled. Her face expressed a kind of sickly distaste, like a famine victim, presented with a platter of food she knows her stomach will not keep down.
Elly quickly went and turned off the music, threw an accusatory glance my way and whispered,
‘Whose idea was it to get those, anyway?’
The idea had been mine but Elly had chosen the music. Vanishing hope tests the nerves and quickly slides into despair. Imperceptibly Elly and I turned on one another. Our arguments were conducted in whispered, rancorous intensity, sometimes out in the garden, casting desperate looks through the corridor to the living room where Jess was fading.
Surprisingly, as the inevitable drew closer, it was Elly who remained the calmer of the two. She dealt with the medical staff, organized appointments, remembered times for therapy sessions and administered dosages. One time, while talking on the phone to a friend inquiring about Jessica, I broke down and cut short the call. After that I refused to pick up. Elly seemed more in control of herself. Quite a turnaround, given her history of emotional crises.
As our child’s got worse the medical staff advised us to move her to hospital. ‘It’s better for Jess to be cared-for by professionals at this stage.’
But Elly was adamant that Jess should die at home, in her own bed.
‘How do they know what’s best for my daughter. Jess hates the hospital.’
Elly and I used to sit down on the sofa after-dinner, watching the news and making more or less inane comments on the stories that came up on the screen. Now we sat in the armchairs, with Jessica’s bed wheeled in the middle and often reaching for our hand as she came out of intermittent phases of sleep. I remember the feel of those hot and clammy fingers.
When the time came it was the hospital psychologist who broached the subject.
‘This is a terrible thing to bring up I know, but have you thought about funeral arrangements?’
I was shocked. Of course, it was at the back of my mind but I had not allowed it to enter my consciousness. Elly threw me the briefest of glances and said,
‘Lorna is right, we need to put a plan in place. Jess could be going any day now.’
She sounded like an executive outlining last-minute plan for a new advertising campaign. That evening, after Jessica had been administered her drugs and was settling down, Elly said to her,
‘Darling, is there anything you want?’
‘What?’
‘A request, a wish, something you want to do?’
Elly’s voice was eerily calm.
Jessica turned to me as if she wanted confirmation of her mother’s words. I felt like an accomplice in a terrible crime. Jessica’s face, flushed red by morphine seemed to be revived by sudden inspiration. The sweetest of smiles touched her lips as she whispered,
‘Yes, let’s keep my ashes here, in our house. On the piano.’
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Audio provided by John Brennan (Thank you John)
Voice and music by Suno
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Please note
The commentators below are fictitious and part of the narrative. Like a Greek chorus they voice their opinions on the events as they unfold.
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Lady S.
This is such a heart-wrenching post, I can hardly bear to read it.
Cynic 2
You’re certainly spreading the pathos pretty thick, Janus.
Lady S.
What a monstrous comment, Cynic. You have no heart?
Lizzie 86
Well, he calls himself cynic. What do you expect?
Pascal
A death is always such a sobering shock for the family, especially when it’s a child. It seems so unfair. Then again, since when has life been fair? Innocent people are dying every day from disease or violence; in accidents, disasters, wars, famines. There is no fairness, no justice out there; just incomprehension.
Lady S.
Jess was such a beautiful creature, a rare joy, in what is generally not a happy tale, let’s face it. She was barely sketched out, then quickly dispatched. That’s shocking. This extraordinary human being, deserved better.