Desecration (2 page)

“We had to increase Polly’s morphine as she is getting a lot of pain from her spine now,” Rachel said, “and her breathing is much worse. She might be drowsy when you go in.” She paused, her eyes serious. “We need to talk, hun. You can’t leave it much longer.”
 

Jamie stood silently, closing her eyes for more than a second as she fought to keep her feelings under control. Despite her compassion, Rachel was an angel of death, her gentle arms helping the children to find their way onwards. But for parents, she represented only intense pain, for there was no avoiding the future she embodied. Jamie opened her eyes, hazel-green hardening with resolve.
 

“I’ll come by on the way out.”
 

Rachel nodded, and Jamie walked down the hall towards her daughter’s room. The children’s paintings on the wall attempted to add a veneer of hope to the place, but Jamie knew that the hands that had colored them were cold in the ground and the sorrow of years had soaked into the building. Parents and staff all tried to keep the spirits of the children up, organizing as much as possible to keep them occupied. But it seemed in the end that many of the little ones were more ready than their parents to slip out of the physical body. Exhausted with pain, debilitated with medication, their souls were eager for the next chance of life.
 

Jamie stood to the side of Polly’s door, looking through the window at her daughter, whose body was distorted by motor neuron disease. Polly had Type II spinal muscular atrophy, and she was already past the life expectancy of children with the disorder. The deficiency of a protein needed for the survival of motor neurons meant that, over time, muscles weakened, the spine curved in a scoliosis and eventually the respiratory muscles could no longer inflate the lungs. Polly was already on breathing support and despite several operations, her physical body was now twisted and wasted. But Jamie could still remember the perfection of her beautiful baby when she had been born nearly fourteen years ago, and the joy that she had shared with her ex-husband Matt. He was long gone now, out of their lives with another wife and two perfectly healthy children he could play with to forget his past mistakes. Sometimes the anger Jamie felt at Matt, at herself, even at the universe for Polly’s pain, made her heart race and her head thump with repressed rage. Her daughter didn’t deserve this.
 

Jamie knew that the cause of Polly’s disease was a genetic flaw on chromosome 5, a mutation somehow created from the alliance of her own body with Matt’s. Perhaps it was some kind of sick metaphor for their marriage, which had collapsed when Polly started suffering as a toddler. But however difficult the journey, Polly had been worth every second. Jamie had always told her daughter that they were an unbreakable team, but now the bonds were beginning to fray and there was nothing she could do to stop it.
 

Jamie glanced in a mirror that hung in the hallway, visualizing the embedded genetic flaws on her own skin. If only she could dig out the part of her that worked and give it to Polly. Her long black hair was coiled up in a tight bun and she never wore make up for work. But with the dark circles getting worse under her eyes, Jamie thought she might have to consider changing her own rules. She looked pale and young, although she was the mature side of thirty-five these days. She touched her hair, tucking in a flyaway strand, claiming the little control she had left, clinging to this tiny victory. Threads of silver ran through the hair at her temples now, but the stress of the Metropolitan Police was nothing compared to living under the threat of Polly’s death. Her daughter’s every breath was precious at this point and Jamie fought for time away from the force to spend at her side. She turned the handle and went into the room.

“Morning, my darling,” Jamie said as she approached the bed where Polly’s twisted and wasted body lay, a tracheostomy tube in her neck helping her to breathe. She kissed the girl’s forehead and put the wireless keyboard into Polly’s hands, turning on the tablet computer, her daughter’s link to the world. Her respiratory function had become so poor that the speaking valve was now useless but that couldn’t stop her inimitable daughter. Jamie stroked Polly’s hair as she watched her thin fingers tap slowly on the keyboard. Mercifully, the muscle wastage had started near the core of the body and left her extremities still able to move, so they had this method as well as lip reading to communicate. Jamie knew how important the computer was to Polly, the connection to her friends and a world of knowledge online, but the speed of her typing was painfully slow compared to even days ago.
 

6 videos last night. 3 more to finish multivariable calculus
, Polly typed.
 

She had been progressing fast through the pure and applied math syllabus of the Khan Academy, an online video school designed to help children learn at their own pace, since many were capable of surpassing their classroom teachers. It was part of the incredible transformation of education, from an era of treating all kids the same, to targeting their specific talents and interests. It was also a godsend for children like Polly, who wanted to devour information non-stop. Even while her frail body lay dying, her brain was desperate for knowledge, although the drugs and her increasing weakness were now slowing her down. She was kept alive by the strength of her will, but that was dwindling like the leaves on the trees in the approach to winter.
 

Jamie knew that her daughter was fiercely intelligent and creative, as if in some way nature had made up for her physical flaws by giving her soaring intelligence. A picture of Stephen Hawking hung on the wall of Polly’s room. The scientist was her idol, and she devoured his books - even at her young age she seemed to grasp concepts that her mother found difficult. Jamie had tried to read ‘A Brief History of Time’, but just couldn’t fathom the science. Polly had explained the concepts in pictures and for a moment, Jamie had glimpsed the far galaxies in her daughter’s mind. She had felt like the child then, instead of the mother. To be honest, she felt like the child now, as if nothing could ever be right with the world unless Polly could run and laugh again. But that couldn’t be. This was not a journey Polly could return from and Jamie knew she couldn’t go with her. Not this time.
 

Jamie met Polly’s vibrant brown eyes, bright with a lively intelligence.
 

“I’m so proud of you, Pol, but you know I don’t even understand what that means. Your Mum isn’t exactly a math whiz.”
 

Jamie pushed away the fleeting thought that it was pointless to learn when the brain would be dead soon. Polly’s fingers continued to tap.
 

I’m doing the cosmology syllabus next. I’m beating Imran.

Jamie smiled. Imran was in a room down the hall, his body ravaged with terminal cancer but, like Polly, he was determined to cram as much into his intellectual life on earth as he could before he left it. On good days, when the drugs didn’t rob them of consciousness, the teenagers could compete on the levels of Khan Academy. Both were competitive and determined to win. Jamie and Imran’s parents were constantly astounded at their achievements, and Jamie credited her daughter’s drive to succeed with preventing her own spiral into depression at the impending loss.
 

Did you dance last night?
 

Polly’s eyes were brimming with the more detailed questions that Jamie knew she wanted to ask. She didn’t need to type them because the conversation was one they had played out for years. Polly’s greatest frustration with her body was not being able to dance and five years ago, she had asked Jamie to do it for her. “Dance Mum, please. Dance for me,” she had pleaded. “And then come back and tell me about it. I want to know about the dresses and all the different people and how it feels to move so gracefully.”

Jamie had relented at her insistence and taken up tango, a dance with its roots in the sorrow of slaves and immigrants, those oppressed by society. Tango was performed with a serious facial expression, emotion held within the dance. To her surprise, Jamie had found in tango her own form of release, and now the nights she danced enabled her a brief escape.
 

“Yes, I went to the
milonga
last night, Pol. I wore the silver dress and my hair down with the comb you made for me. I danced with Enrique first and he spun me into a close embrace …”
 

So began the telling, the ritual they went through every day after Jamie could manage a night at tango. The erratic hours of her job made it difficult to go regularly, but she did find a sublimation of grief through the movement of her body. The late nights were worth the moments of clarity when focusing in the moment let her forget, albeit briefly.
 

Sometimes Jamie lied and told Polly stories of a tango night she didn’t actually attend, an imagined evening where she had spun on the dance floor in the arms of a strong male lead, when in reality she had been at home, eyes red with weeping. Some nights, Jamie dreamt of walking along a beach, the ocean sucked back and the sand exposed, leaving sea creatures high and dry. There was a moment of calm when the waters receded, a suspended time of complete silence and rest. But she knew the tsunami wave would crash towards her soon, destroying everything in its path. Right now, Jamie held back the grief, but when it broke, she knew she would drown in its choking embrace. Part of her almost welcomed it.
 

Did you dance with Sebastian?
Polly tapped with impatience.
 

Jamie laughed at her daughter’s need for gossip. It was a marvelous moment of normality, although Jamie wished she was quizzing Polly about boys and not the other way around.
 

“You know I can’t ask a man to dance, Pol. It’s against the etiquette of tango. Sebastian was there but he was dancing primarily with Margherita. She’s very good, you know.”
 

Bitch.
 

“Polly Brooke,” Jamie scolded, “enough of that language!” But Jamie couldn’t help smiling, because the twenty-five year old Margherita was indeed a talented, beautiful bitch who dominated the London tango scene. Polly had seen her regular dancing partner Sebastian on YouTube and had become convinced that he should sweep Jamie off into a romantic sunset.
 

Polly’s face suddenly contorted in a grimace of pain and she started making choking noises, a grotesque parody of breath. Increasingly now, the secretions in her lungs became too much and she struggled for air. Jamie had heard it described as similar to drowning, the body fighting desperately for oxygen. The keyboard fell to the floor with a clatter as Polly’s fingers clutched at the air in grasping urgency. Jamie’s heart rate spiked and she banged the panic button on the wall, knowing that the alert would be triggered in the nurse’s area, silent so as not to alert the other children. She gripped Polly’s hand.
 

“It’s OK, my darling. I’m here. Try to relax. Shhh, there now, Pol. It’s OK.” Jamie couldn’t hold back the tears, watching helplessly as Polly convulsed in pain, trying to cough up the stickiness that was engulfing her. Rachel swept into the room with another nurse and Jamie stepped back, letting them inject Polly with a sedative. Tears streaming down her face, Jamie felt impotent and useless as she could do nothing to take away her daughter’s pain.
 

Rachel began to suction the fluid from Polly’s lungs, the noise a hideous gurgling, but after a few seconds, Polly’s tense body relaxed on the bed. Jamie stepped forward to take her hand, unclenching the fingers that had tightened in pain. She stroked her daughter’s skin, touch her only communication now. The body on the bed was her daughter, but to Jamie, Polly was not an invalid in pain, a wracked, twisted, physical self. She was a soaring mind, a beautiful spirit trapped here by mistake. Some days Jamie wished death for them both, to escape together into an untethered future. She picked up the cuddly Golden Retriever puppy from the floor where it had fallen. Polly had always wanted a pet but the soft toy was the best Jamie could do. Polly had named it Lisa and kept it near her ever since, grubby now from a lot of love. Jamie tucked the soft toy under her daughter’s arm.
 

Rachel stood close by, and gently brushed strands of hair from Polly’s face.
 

“I know you don’t want to have this conversation, hun,” she said, “but sometimes it’s better to let our children go. We can continue to keep Polly alive but her body is almost finished. You can see that, Jamie.” Her voice was soft and calm, a practiced tone that Jamie knew she used with parents and children alike. “It’s not something parents want to admit, but Polly’s pain will only be over if you let her die. In any other society, she would have died of natural causes by now. We’re just keeping this vessel alive, prolonging her pain.”
 

Although appalling on one level, Jamie knew it was entirely appropriate to have this conversation in front of Polly, sedated or not. She didn’t want to let her daughter’s hand go in order to step outside the room, but also she knew that Polly had expressed her own strident wishes about the matter. They had talked about death and she knew that Polly wasn’t afraid of it, only of the pain of passing. Jamie knew that Rachel talked about the end openly with the children and she understood the logic of that. There was an honesty at the hospice that cut through the crap of what was appropriate to discuss in polite society where the death of children was kept behind a veil of silence and denial. Here it was brutal in its regularity.
 

“I don’t want to say goodbye,” Jamie whispered. “I’m not ready yet.”
 

“But what if Polly is?” Rachel said quietly, her voice speaking a truth that lingered in the antiseptic air.
 

Jamie’s phone vibrated in her pocket, breaking the moment.