by Ann Kelley
‘Now page 40,’ I tell her.
James Darling, b1884 d1942. This master craftsman of Arts and Crafts domestic and architectural furniture married artist Fay Stevens (daughter of renowned Cornish photographer Amos Hartley Stevens, and Mary Menzies, novelist). One son – Amos.
‘Fay? James Darling? Moss’s Mum is your Grandfather Hartley’s sister?’ Her eyes are wide. ‘So we are related to the Darlings?’
‘Yes, Mum, that’s right. We are part of their family. And Dad’s grandfather was the famous photographer, Amos Hartley Stevens, and Fay’s son Moss (Amos) is named after him.
‘How amazing! So Fay, Gabriel’s gran, she’s your great-aunt?’
‘You would probably never have known if Gussie hadn’t done the research,’ said Alistair. ‘I think this calls for another bottle of bubbly.’
CHAPTER FORTY-EIGHT
EVERYTHING IS SET; holly wreath on the front door, tree lights on, table set with starched white linen and lace, dishes and plates lined with lace doilies and full of nuts, fruit and goodies. The cats are all wearing red bows on their collars and looking, as Mum says, Like Butter Wouldn’t Melt. I wish someone would explain that saying to me.
Arnold of the Holey Ears turns up with his very normal looking wife at the same time as Eugene, who is dressed as Santa Claus.
Mum, unbeknownst to me, has invited Ginnie. It’s so lovely to see her. She gives me a hug and a subscription to the RSPB. I’ll talk to her about Pop the herring gull later.
At the moment she’s kissing Eugene under the mistletoe he brought with him.
Bridget and her family arrive – (excluding SSS, who has a bad cold. Shame). Brett, Hayley and Steve arrive, laden with gifts for us, which they put under our tree for us to open later. Mrs Thomas, in her Sunday best, is staying to share our Christmas dinner. Mr and Mrs Lorn bring a bottle of whisky for Mum and a huge pack of chocolates for me. Our holiday neighbours are dressed in elaborate fancy dress – eighteenth century costume – in rehearsal for New Year’s Eve, and last but not least all the Darlings arrive.
Phaedra and Troy stay long enough to hear our news that we are second cousins or whatever and then shoot off to ride the surf at Fistral Beach with friends who are waiting in Barnoon car park in their Beetle. Mum and Claire fall into each other’s arms as if they are long lost sisters. Amos smiles benignly. Ha, I’ve used the word of the day.
Fay gives me a big kiss and says ‘Welcome to our crazy family, Gussie, and please call me Fay, not Auntie Fay or Great Aunt Fay, just Fay.’
She hugs me to her on one side, Gabriel on the other, and says, ‘This is the best Christmas present I’ve ever had.’
Me too.
‘Fay, could you tell me about my grandfather?’
‘Hartley? Well, I hardly knew him, my dear, he was so much older than me. He’d left home when I was still a small child. We didn’t see much of him really, he was always up to some get rich quick scheme. I think he was in Plymouth and Bristol, then he came home, married your grandmother, and ran a car sales company for a while.’
‘And what about her?’
‘Well, my parents didn’t approve of her, I remember that. Bit of a gold digger, pretty, but no good for Hartley. He was weak you see, easily led.’
Later Daddy phones to say Happy Christmas. I thank him for the computer, and say Alistair is going to help set it up for me and tell him about the Darlings.
And guess what, Daddy’s not coming after all. I don’t even wait to hear his excuse. I don’t care what it is. I don’t care if he’s broken a leg even. I don’t care if he’s broken both legs. I hand the phone to Mum without saying a word more to him.
‘What is it?’ she says, seeing my face.
‘I knew it was all too good to last.’ I go to my room.
CHAPTER FORTY-NINE
WE HAVE TO leave immediately.
My Life Call bleep goes off at 6 am. Mummy phones the transplant coordinator and they say there is a possible donor and we are to get there straight away.
Ohmygod, I don’t believe it. A new heart and lungs! Mummy cries and hugs me. Alistair will drive us. He has a bigger faster car than us and has a week’s leave.
Mrs Thomas will take all our left-over food, feed the cats today, and then the Lorns and Darlings will look after them until we get back home, which could be weeks or even months.
‘Don’t you worry about a thing,’ she says, still in her dressing gown, in our kitchen, ‘I’ll see to the cats and everything.’
I think about Mrs Thomas’s eighty-year-old heart. It’s probably in a similar state of decay as mine, battered and bruised like an old balloon that’s been kicked and punched too often and all the air has escaped and it’s collapsing and wrinkled and can’t float any more, but she’s still very much alive and has plenty of fight in her.
And I think about the donor heart. Is it waiting in an icebox? Or is it still warm, beating inside a person who’s been injured in a car crash, and the lungs kept pumping artificially by a machine? Are parents sitting holding the hands of their loved one, waiting for them to die? Did they have to give permission for the healthy organs to be used by someone else or did the dying person have an Organ Donor Card?
Mum tries to phone Daddy but he’s not there.
I pack Rena Wooflie, my cricket cap, pyjamas, flip-flops, T-shirts and baggy trousers. It’s always very warm in hospital. It’s like packing for a desert island. What books shall I take? I pack The House at Pooh Corner. Charlie tries to sit in the suitcase on top of the clothes: she wants to come with me. Oh, Charlie, I wish you could.
Mrs Thomas stands at the door waving and the cats are sulking at the window. Heavy rain falls, but the sun is shining from between two enormous black clouds, a shaft of light pooling the town. I look over my shoulder at the huddle of houses sparkling white, the little harbour where swirling gulls laugh and fret and a few boats swing on the choppy waves.
A note from Ann Kelley
‘Gussie just came to me. I don’t write for children, I write for a reader. It’s a glimpse into the head of a child with a chronic disease, who has to find a way to live her short life to the full. She works out a philosophy for living from the books she reads and from the wildlife and nature around her. Because she is not able to be active any more, she becomes an observer. She watches birds and insects, badgers and cats.
My son Nathan died in 1985, aged 24, a week after a heart and lung transplant. He had a rare congenital heart defect – pulmonary atresia – the lack of a pulmonary artery.
Gussie isn’t my son. She’s an amalgamation of several people – my daughter, my grand-daughter, my son and me – and she is mostly herself, an odd, funny, bookish child, eccentric and thoughtful – a one off, as Nathan was.
My son knew that even with a successful transplant, in those days he would only have had a few more years. But he was so happy to have been given that chance.
I think that is why I write about Gussie – to make people see the importance of being an organ donor.
Please be an Organ Donor.’
www.organdonor.gov
Enjoyed The Burying Beetle?
Continue the journey with Gussie in:
Inchworm
Here is a taster of the first three chapters.
PROLOGUE
The unexamined life is a life not worth living – SOCRATES
ALISTAIR SWERVES TO miss a huge heap of something in the middle of the road. It’s 3 a.m., the dead of night, the end of the year.
‘What the…?’
Mum stirs in the front passenger seat. ‘There’s another.’
‘What is it?’
‘Looks like elephant shit,’ I say.
Alistair winds down the window. Mum says, ‘Smells like elephant shit.’
Around the bend we come across them. Trunk to tail, the troupe tiptoe silently through the sleeping London street.
‘A circus?’
‘It’s lucky to see elephants,’ I say. I need all the luck I c
an get. I am on my way to have a heart and lung transplant.
CHAPTER ONE
Intensive Therapy Unit
MY FIRST THOUGHTS on waking are – Where are my cats? I feel no pain but I do have tubes coming out of every orifice, plus one or two new holes in my chest and other places. My throat is sore and I can’t talk. Mummy is here wearing a hospital gown and surgical mask, though I can still see her tears, and Daddy looks anxiously through the glass door. He can’t come in because he has bugs up his nose.
It’s several days since the transplant. I am pretty drugged up and sleep a lot but everything went well, according to my cardiac surgeon. I have lots of nurses. Someone watches me all the time. It’s like having slaves. They turn me, wash me, change my dressings, take my temperature and blood pressure about a million times a day. There are machines all around me, monitoring all my bodily functions. I have catheters and bags of liquids going in and out of me, but I am now breathing without mechanical assistance. Various drugs are being fed into my veins. I feel sleepy but contented, not worried. The physiotherapist comes to make me cough. She calls me Gorgeous Gussie. She makes me laugh and it hurts.
Daddy strokes my hand. His nose germs have gone. There’s a canula taped onto the back of my hand. He keeps forgetting and knocking it. It stings. I glare at him and he apologises.
Thoughts flutter in my head and out again like a flock of pigeons rising from earth in a panicked bunch, like tickertape: loose sheets of paper snatched by the breeze.
Alistair cannot come into the Intensive Therapy unit, even though he’s a doctor, because he isn’t related. He waves through the window at me, blows kisses and gives the thumbs up sign.
I sleep and I am in a ball of pain. I am everyone who has lived, who is living now, who is going to live, and we are all in pain and this ball of pain is God. I am God. And the pain is everlasting. But with all my strength and power I force the pain into millions of parts, millions of people sharing the ball of pain, and I force the pain into a flat line of time – past, present and future. I am God, and God is everyone, and we all share the pain.
I open my eyes and see nurses, my invention, sharing my pain.
Was it a nightmare? It seems too real; I am still God, I am still in pain, but the pain is less, fading. There is a dreadful stench, like a dead elephant. I dare not close my eyes because I am terrified. It’s then that I remember, I’ve had this dream before. It is only a dream.
Room 3, B Ward
When I can talk again, I ask my nurse, Katy, if she is real. She laughs.
‘I was last time I looked,’ she says.
‘Is there a horrid smell?’
She sniffs. ‘No more than usual,’ She is doing something to my IV line. I suddenly start to cry.
‘Gussie, what is it, darling?’
‘I had a nasty dream. It was awful. And I…’
I’m afraid I blubber.
‘Nightmares are common after transplant, I’m afraid. Lots of people get them. You mustn’t worry, they’ll go away.’
I ask for a mirror. My chest is covered in a wide tape, so I can’t see the clips or incision but I want to see my face, to see if I’ve changed.
I have – I’m pink! Pink cheeks! Pink lips! Normal coloured. Not blue any more. I look normal. I don’t know whose heart and lungs I have inherited. It feels weird, very weird: not quite a robot but someone else’s heart and lungs working inside me, attached to my veins and arteries. Like putting a new engine in a clapped-out car. I was clapped-out, breathless all the time, fainting, and my heart racing like a steam train going through a tunnel. Chest pains, palpitations, nausea, dizziness, exhaustion, headaches, cyanosis, the usual stuff. I can’t wait to try out my new motor. Will I have the donor’s memories or habits? Perhaps I’ll start scratching my bum or tapping my foot. I could blame all my bad habits on my donor! Perhaps I will suddenly crave Brussels sprouts or black olives, perhaps I’ll be able to speak Russian or be mad on motor racing or Manchester United? If my donor was unhappy, will I have her bad memories? I hope she wasn’t allergic to cats; what a terrible thought. At pre-op meetings I was told that I wouldn’t acquire any of a donor’s traits. The heart is a pump and the lungs are bellows: they don’t carry memory. It’s a myth, they said. I won’t suddenly be an expert on quantum mechanics. Shame.
I don’t feel like a different person. My eyes look the same. It’s the same old Gussie staring out of them. Maybe I look a little older. I might start growing now, growing tits and hips and pubic hair. Getting taller. Putting on weight.
‘If I asked the doctors, do you think I could see my old heart and lungs, Mum?’
‘You gruesome little beast, no, I shouldn’t think so.’
‘Oh, why not?’ It would be fascinating to see my old organs, to see the disease I was born with. I hope they are going to keep them to show medical students.
‘Let’s concentrate on looking after the new organs, shall we?’ says one of the nurses, Katy, who has just done a blood test and is now is doing something to my IV lines.
I have the same hallucination as I had before. It’s so scary. I hate it. I’m having an anti-psychosis drug to make the horrors go away.
Mum brings in some music for me, with ear phones. I don’t know what it is, but Alistair sent it. It’s Handel’s Arias for opera or something, very soothing. He said to listen to it when I go to sleep and then the horrors won’t come back.
I sleep and dream I’m running along Porthmeor Beach, with my cats following me. The sky is pink and the sea flat. Suddenly an elephant appears, swimming majestically, then another and another. They form a circle and raise their trumpets and squirt water into the sky, like an illustration in a Babar story. I wake feeling wonderful, sore but happy. I can breathe, fill my new lungs; soon I’ll be able to run along the beach again.
I can’t wait to go home to my cats, my darling Charlie and bossy Flo and scaredy-cat Rambo. To see Brett and my new family: Claire and Moss, Gabriel, Troy and Phaedra, and Fay, my great Aunt Fay. I’ll be able to go to school. I am so grateful to my donor and his/her family. Without them I would not be alive. And suddenly I am in tears for that dead person and her grieving family and friends.
It rains every day but I love the raindrops running down the hospital window, the blurred bones of leafless trees. I love the starlings waddling across the grey grass; a robin’s red breast the only colour in the January landscape, like a still from Doctor Zhivago, the sky a khaki grey-green; I’m growing fond of the muffled sound of a helicopter landing with someone arriving for a transplant, or maybe the transplant coordinator delivering an icebox with organs in.
Today’s biopsy shows no signs of rejection, no inflammation.
My first walk: I’m helped, of course, but to be vertical and walking is marvellous. I don’t feel as breathless as I did BT (Before Transplant). A whole load of tubes, like a milking machine, accompanies me. The cardiac monitor has been unplugged, so I can move about but I feel woozy and have to get back to my bed, my safe island.
Later I find myself talking to my new heart and lungs as if they are visitors and I want them to feel at home. In fact they are more like adopted children, who will settle down and learn to love me as I learn to live with them, hopefully. Otherwise – disaster! ‘Now I hope you don’t miss your other body too much, though I’m sure you will for a while, until you get used to being inside me. I promise to look after you. I’ll do plenty of exercise and have my teeth checked regularly so I don’t get infections. I’ll eat all the right foods and never eat smoked salmon or unpasteurised cheese.’ (I will have to avoid food poisoning as I am immunosuppressed owing to all the antibiotics etc that I have to take. At the moment I am pumped full of painkillers, Septrin, cyclosporine, all sorts of drugs with long names.)
‘I can’t take you to a foreign country for a year,’ I tell my new organs. ‘I can’t remember why, but that’s all right because we’re going to live in Cornwall, and that’s like a foreign country. It’s got banana trees and pal
m trees.’ I press my hand against my chest and say, ‘I promise you you’ll love it. I’ll never eat shellfish or blue cheese or rare meat. And no soft eggs.’
Bloody hell, am I going to have to survive on vegetable soup?
If the heart cannot feel why do we say heartfelt? Deep in my heart? Heart throb? Heartache? Heartbroken? Fainthearted? Eat your heart out? Lose my heart to…? Set my heart on doing something? Braveheart? With all my heart? (I am told that because of some surgical procedure I will feel no pain from my new heart, so no heartache then.)
I’ve asked Daddy to lend me a camera – I left mine in Cornwall – so I can record what goes on here in hospital. He gives me one of his own precious cameras – an old Leica. It’s fiddly to load the film but it’s smaller than my Nikkormat and not as heavy. It has to be sprayed with disinfectant before I can use it. Hope it doesn’t harm the works. I make portraits of all the nurses and doctors who come into the room, the cleaner, the physio, my pale-blue room, the machines behind my bed, the view through the window, and Mum. Mum has lots of grey hairs. Shall I tell her? She looks older and anxious, but she’s always looked anxious.
I’m not allowed out of my room yet. It’s like being in prison. But I have mail!
Der Gussie,
How ar yu? I am good. My rabits and duks are good. My cats are good. Zennor is good. She et wun ov Claire’s best shoos. I hope you will get beeter and I will sea yu sooon.
Luv,
Gabriel xx
(He has drawn a picture of his puppy chewing a shoe. It was in the same envelope as Fay’s Get Well Soon card that had a lovely drawing of a tabby cat on it by an artist called Gwen John.)
My dearest Gussie,
I hear you are doing very well and making a good recovery. It will be lovely to see you again – my little great niece! We will have great times when you come home. Do you like the ballet? I can take you if you like, with Phaedra (if she’s not surfing). There’s a good Dutch dance company performing in Truro in the spring. Hopefully you will be back by then. My naughty cat Six-toes killed one of the chicks – the black one. She is banished from the garden now and has to stay indoors. She is very cross as you may imagine.