wherever we went, nudging each other and whispering

that she was crazy or drunk. But her mood swings were

the worst.

She’d be high as kite one minute, then fly into an

uncontrollable rage over the smallest thing. She got so

angry because Neighbours was canceled one bank holiday that she started hurling things at the TV, and smashed the

screen. tried to calm her down, tried to explain, but there

was no reasoning with her—she needed her routine and

didn’t understand why she couldn’t watch her beloved

soap. In the end Sarah’s husband, Steve, had to physically

restrain her to stop her hurting herself. Then, when he

finally let go, she called the police, showed them her

bruises and had him arrested for assault.

The only thing that seemed to calm her down was

her cigarettes, but like with her temper, she didn’t seem to

know when, or how, to stop. She’d just smoke one after

another—up to fifty

day—inhaling compulsively until

they burned down to her fingers. Then, if there weren’t

another dozen full packets ready in the cupboard

(something she’d check obsessively), she’d freak out

about that too.

Other times, she’d get utterly depressed, despairing

at what was happening to her, frightened about the future,

paranoid that was going to leave. But didn’t. She was

my mother, my whole world.

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And felt so guilty. She’d been struggling for years

and I’d never twigged what was really going on, never

realized. So learned how to cope: to stick to routine, to

keep episodes of all her soaps recorded just in case, to buy

cigarettes in bulk and leave ashtrays everywhere. To stop

her burning her fingers

even bought her an old-

fashioned cigarette holder that she absolutely adored—

she said she felt like Audrey Hepburn.

Nana and Sarah helped as much as they could,

worried about me dropping out of Sixth Form, losing

touch with my friends, my future

Nana wanted me to

take the predictive test straightaway, but

wasn’t

allowed—at sixteen

was too young. Plus there were

other factors to consider.

Bex bombarded me with questions: What would

do if the test was positive? Would it be worth going to uni,

or learning to drive? Should really get married? Or have

kids, if they could get it too? Wouldn’t that be cruel, or

irresponsible, or selfish? Endless painful, impossible

questions that left me confused and sick and dizzy.

kept quiet after that, told Bex to, too—tried to be

normal, to keep up with my friends as they started Sixth

Form without me, with odd days out, phone calls,

Facebook. But all they ever seemed to do was gossip about

their new mates, giggle about guys or moan about their

course work, and it all seemed so petty suddenly. So

meaningless. It was actually

relief when they finally

stopped calling.

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And besides,

had new friends—online friends

from the Huntington’s Disease Youth Association. Teens

who understood what was going through, who’d lived

with the disease for years, watching as it slowly sapped

the independence and vitality from their loved ones day

by day. Though we now realized Mum’d had symptoms for

years before her diagnosis, we met people at her support

group in much later stages of the disease—people whose

families had deserted them because of their volatile

behavior, not realizing they had HD; families torn apart by

denial; parents whose children wouldn’t visit them for

fear of witnessing their own future; pensioners who’d

envisaged their retirements spent indulging their hobbies

and grandchildren, not visiting their formerly strong,

healthy spouses or adored grown-up children withered

and bedridden in care homes.

Mum was so frightened of becoming burden like

that. She couldn’t bear to imagine that someday she might

need someone to spoon-feed her and wipe her bum—that

wasn’t who she was Though it pains me to say it, in way, she was lucky.

And for

while she was reasonably okay. The

doctors prescribed medication that toned down her anger,

depression and chorea, and on really good days she

developed

jubilant carpe diem attitude, throwing her

worries to the wind as we went swimming in the sea,

boating on the river, and picnicking on the Downs. For her

birthday Nana, Sarah and even took her to Paris for cake

beneath the Eiffel Tower. She was even due to start

53

clinical trial for new drug, which they hoped would slow

the disease’s progression.

But then,

few weeks later, she went upstairs for

something in the middle of the night, lost her balance and

tumbled all the way back down, smacking her head

against the wall, causing

brain hemorrhage. That was

the beginning of the end. Her symptoms seemed to

advance much more quickly after that. She became

completely bedridden. She struggled to swallow her food.

Then she developed pneumonia.

It was awful. Nana and Sarah both did their best,

coming over day and night, and care workers rallied

round, but

was the only one there twenty-four-seven.

The only one watching my mother slipping away. The only

one witnessing what might happen to me.

What thought might happen to me.

But she knew it never would

The thought comes like

burning scythe through

my chest as stare at the grab-bars, the child-locks, her

chair—things that have haunted my future—things that

I’ll never need— and she knew! All that time she let me believe was at risk, and all the time she knew!

grab pair of scissors from child-locked drawer

and dive at the chair, screaming as stab the sharp blades

into it again and again, slashing and hacking at its wipe-

clean surface, leaving great gashes bleeding foam. hate

this chair so much

hate its carefully padded limbs, its

folding backsupport, its urine-proof coating. So practical.

So functional. So ugly and terrifying and waiting for me—

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my destiny. Well, not anymore! shove the chair onto its

side, kicking and wrenching at it with all my might until

finally an arm snaps off, sending me slamming painfully

into the wall, but don’t care. Never again, never again

will anyone sit in it, rely on it, succumb to it.

My eyes scan the room greedily, searching for more

targets; then suddenly the front door flies open and man

bursts in, wielding cricket bat.

“All right, you—” Steve stops when he sees me.

“Rosie?”

“Rosie?!” Sarah pushes past him. “Rosie! What on

earth are you doing?” Her eyes take in the savaged chair,

the scissors. “Are you okay?”

“I’m fine.” stare at her coolly, the scissors cold and

hard in my hand, blood pounding in my temples.

“We heard all the noise and thought”—she glances

at Steve—“I thought it was burglars!”

“Well, it’s not,” say. “So you can go.”

Sarah glances at Steve and pats his arm. “You go.”

He frowns. “You sure?”

“You too,” tell her.

“Off you go.” Sarah smiles at her husband as he

leaves. “I’m staying.”

“There’s no need.” grit my teeth. “Just go.”

She folds her arms and meets my gaze evenly.

explode. “What do you want?

“I don’t want anything.”

“Then get lost! Just get lost! This is my house, and