I add, ‘Maybe I’m just scared that there’ll be something in there I don’t want to see.’
My daughter nods wisely. She doesn’t ask me what this thing might be. Instead, she comments, ‘I have heard the story of what was Pandora’s Box, Mum, and you’ve left one of them out.’
‘And what might that be?’ I arch my brows. A ray of sloping sunshine appears for a moment across the kitchen worktop, making long shadows of our coffee cups. Outside, the squally wind is chasing the clouds across the canvas of the sky, opening up small patches of blue.
‘Hope,’ she says simply. ‘You’ve left out Hope.’
I have decided that when dawn breaks on my fifteenth birthday, that is the last day I will ever spend on this planet.
I am not depressed and I am not angry with my parents.
I am not insane, neither am I frightened of Death.
I am frightened of dying, however, in the way that I inevitably will if I don’t take matters into my own hands. I meant what I said to my mum about hope, though. I do have hope. But it’s for the others who are going to be left behind after me, that’s all.
I have a poster-sized photograph of me and Daniel in my bedroom. It’s one of my favourites of the two of us and it was taken nearly ten years ago because in it I’m five and Daniel is just one. It’s an ‘action’ shot. We’re both in our swimsuits on this huge empty beach in Cornwall. I’m jumping off a rock with my eyes closed and my arms in the air. I love the smile on my face. Whenever I look at that photo I remember what it must have felt like to be free. We called that our ‘jumping rock’. It seemed so huge to me then, but we went back to Summer Bay three years ago and the rock was still there in the same place, same green algae and footholds all over it, jutting out of the sand at the head of the beach and, guess what…it had shrunk!
Well of course it hadn’t really shrunk. The rest of the world—including us—had just got bigger. Daniel kept jumping off it, showing off, because in my photo he’s just a baby sitting on the bottom waiting patiently for me to jump and here was his chance to take on a more active role. I wasn’t completely confined to Bessie—that’s my wheelchair—three years ago, but neither were my legs strong enough to jump. This time I was the one sitting on the sand waiting, so Mum took a photo of that and Daniel’s got it on his wall, and it kind of evens up the balance of power as far as he’s concerned.
He’s like Mum there, see. They both have this immaculate sense of fairness and justice about things. I may only be fourteen but I know damn well that life isn’t fair. Maybe it’s genetic or something, I don’t know, but some people never seem to work that one out. That’s Mum’s fatal flaw; that’s how I’ll get her to come round to my way of thinking in the end. You’ll see.
Anyhow, this photo of the last time I felt really free, it’s given me the idea of how I want it to be on my last day.
I have decided that I will go down to Summer Bay in Cornwall and I will jump off a cliff, and that way, for those last few moments of my life, I’ll be flying. I won’t die in my bed all shrivelled up and cold as my limbs finally atrophy to the completely withered stage. I’ll be flying through the sunshine. It’ll be a hot, peaceful, blue-skied day. We’ll do it in the early morning—I was born at 6 a.m.—so there’ll be no footprints in the sand. The sea will have wiped everything clean from the night before. There will be no marks there before I make my mark.
I’m not bothered about the impact. It will be so quick I just won’t feel it. I’m focusing on just that one moment when I go over the edge. I’ll be like a white bird—a seagull—twinkling in the sunshine. I’ll feel the warm air rushing up through my hair and I’ll be…well, I’ll be released.
I’ve struggled with this whole plan for a while because I was worried that I might be being a bit, well…selfish. Everybody else is going to suffer and I hate the thought of that. Then I think—hell, they are going to suffer anyway. This way we’ll just get it over and done with. A long, protracted death with every vein stuffed with needles, tubes down my throat to aid breathing when the lungs cave in and a tiny bump under the bedsheets where my shrivelled legs should go is even worse.
I haven’t forgotten Miriam. One day she was just like me—she was okay enough, with the same disease, but still okay. Then suddenly…poof! It all went downhill for her. I heard them say she was lucky; that it could have taken much longer, but no, she was lucky. What if I’m not so ‘lucky’?
‘Did they give you an initial diagnosis of MS?’
The first time I ever saw Miriam we were both sitting on the green benches outside Neurology. She had brought crossword puzzles and drinks and things and she seemed to know everyone in the department by name. I, on the other hand, was just sitting on my hands, feeling sick to my stomach with nerves. I remember I couldn’t take my eyes off her wheelchair. I wanted desperately to ask her if she’d always been like that or whether it was this illness that had done it to her but at the same time I really didn’t want to know.
‘Hi,’ she’d started again when I didn’t answer her. ‘I’m Miriam.’
‘Uh, yeah. I’m Shelley. Yeah, they did. They thought it was MS. At first.’
She had taken a thoughtful sip of her juice carton through a straw.
‘And now?’
‘Now they think it might be something called AMS.’
‘Atypical Myoendocal disease.’ Her eyes had beamed at me. ‘Same as me, then. Welcome to the club! We’re very unique, you know. We’re less than one in five million.’
‘I feel honoured,’ I’d muttered under my breath.
‘You should feel honoured,’ she’d laughed, and I remember her blue eyes had been warm and bright with humour. ‘It means you now get the best consultant on the block; the gorgeous Doctor Ganz.’
‘Uh-huh.’ I’d already met him. He seemed kind. I didn’t think there was any danger I would be falling in love with him, though.
‘Just remember that I saw him first,’ she added, but there was a more important possibility rearing itself in my mind just at that moment.
‘Does it mean, if it’s atypical MS, that there’s any chance we could get better?’
That was the one and only time I ever saw a shadow cross Miriam’s face.
‘You don’t get better from this, Shelley,’ she told me. ‘It’s atypical, because it actually…’ she hesitated, ‘look, I guess I’d better let them explain it all to you when you go in. They’ll put it so much better than I ever could. Have you had an MRI done yet?’
‘That thing where you go in the tunnel and they look to see if there’s any nerve damage?’ I’d nodded but she didn’t say any more and I’d guessed, correctly, that she’d just been trying to distract me. Miriam was the one good thing to have come out of all of this. She was the best friend I ever had. She really was one in five million.
But the thing is, it was like she was a friend travelling the same road as me, only she happened to be further up ahead than I was. Every time she got a new symptom, I knew it would be only a matter of maybe six months to a year and then I would get it too. She never had any pain until the end, and neither have I had any yet. Nor do I want to. Dr Ganz kept saying to me that these things were all very individual. Nobody could predict how it would go. Not enough people had been studied to make any hard and fast conclusions. The only hard and fast conclusion that I know of is that the condition is, in the end, fatal. Miriam came to the end of her road. It’s a year later for me. I don’t need anybody to spell out what that means. I guess the thing I detest most about my situation is the inevitability of it. I’m like a fish