Prologue: Dying to live
Mon, 4 Sep 2034
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Mon, 4 Sep 2034
Skye had only one memory of her great-grandma. Despite being ninety-four and needing a cane, she never dressed down. Her accent was likewise unwavering, holding fast onto its Jamaican origins even after sixty years in England. In the memory, she wore a red dress and adorned herself with pearls.
Skye was four and had been sitting on the carpet, quietly playing with a teddy bear as her parents shared tea with her great-grandma. A pair of hands clapped, startling Skye into the conversation.
“For no reason.” Great-grandma shook her clasped palms. Her bulging veins networked over her wrists like mole tunnels.
Skye’s mum set a hand on her chest. “No.”
“Don’t scare Grace, Nan,” Papa said in a hushed tone.
“Tchip, you still won’t believe me,” great-grandma said, as if wounded.
“Never said that. I know grandpa got stabbed by his cousin.”
“The cousin did have a demon.” Great-grandma tapped her index finger against her forehead. “He twitched and talked funny. He hanged himself – all the demon’s doing.”
“Nan, please.” Papa looked to Skye, who sat wide-eyed. “There are no such things as demons.”
Mama gave Papa a tap on the forearm. “You cannot assume to know everything, Samuel.”
“I saw it,” Great-grandma insisted. “I saw it.”
A decade later, Skye would think back on the memory as she helped her Auntie Marina care for Papa. His limbs twitched and jolted against his will. His words had become disorganised and sometimes indecipherable. And he would get angry. He would yell and punch walls, and himself, and once even Skye’s stomach. He had been so mellow just a few years ago, but something belligerent had possessed him.
It was no demon. It was Huntington’s Disease. And sometimes Skye wondered if her long-dead relative, who had stabbed her great-grandpa, had been afflicted with the same illness.
A hereditary disease, Huntington’s can take up to twenty years to down a person. Symptoms could come about at any point in one’s life. The risk depends on what genetic smoothie the biological parents imparted upon their child.
‘CAG’ is the string of letters in DNA that matters for Huntington’s. It’s fine if a person has one CAG, or two CAGs, or even thirty. It’s when you hit forty repeats that you’re in trouble. And the more repeats a person has, the sooner the disease would enter their life.
Her father passed away in the late summer of 2034, having jumped to his death instead of trudging on for a couple more years. Skye was twenty-two. She hoped that she was completely free from the horror of this disease. So, she got tested for it.
The results showed that she had fifty CAGs, giving her a fifty-fifty chance that her symptoms would already manifest by her late twenties. She’d lose her limbs and her voice. She’d lose her independence. And, only after two decades of suffering, would she lose her life.
Unless something else killed her first.
Skye sat with her arms folded over herself in the doctor’s office as she listened to Dr. Alya Almasi go through the next steps. Therapy; support groups; a healthy lifestyle; what all the NHS would cover until she rolled into her grave. It sounded like palliative care, because that’s what it was, really.
“Care for Huntington’s patients starts long before symptoms come along,” Dr. Almasi said in her light Scottish accent. She had these doleful brown eyes that shone as if she were always close to tears, even when smiling. “And that care starts with becoming your own advocate.”
Skye’s face was a stone wall.
“It’s OK to be in shock.” The doctor reached to rub Skye’s shoulder. Again, stone.
All Skye was thinking of was what her closest friend, Nixie, had told her a week earlier.
There was a way out, a type of cure.
But it would require her to die.